EEG scheduled

I was able to get in touch with the Neurology department at Tulane Hospital today and the scheduler was able to get us on the schedule for Thursday morning. I confirmed the date, but she still needed to call the nurse over at Jayden's Drs office to have her to call for the authorization from Tricare and to have her to fax over the order. I do believe it would have been MUCH easier for the nurse to call Tulane herself, but oh well, it's done. I'm still not understanding why he needs a 4th EEG done, though. We KNOW he has epilepsy and we KNOW that his seizures are breaking through the current meidcations. At this point, I have no idea what information she is trying to find by doing a 4th EEG. He has to be sleep deprived for it so we will keep him up until midnight on Wednesday and send him to school on Thursday morning. Then we will pick him up early and head over to Tulane for the EEG scheduled for 11:30. The hard part will be keeping him awake for the ride to the hospital. His genetics appt is scheduled for next Tuesday. If we don't start to get some answers or, at the very least, some medication adjustments or changes, we will be switching doctors.

My mom is the head of her nursing dept and was very upset about the experience I had with the nurse last week. She said that it definitely sounds like the nurse is sending me information prior to seeking advice from the Dr, especially with the refusal to refill Jayden's medications. I do hope that no Dr will ever refuse to refill a patient's seizure medication without good enough reason to do so! So my mom decided to call the nurse and speak with her. She said it was a very pleasant conversation and my mom did mention the State Board of Nursing to her at some point. The nurse told my mom much more information than she told me (not about Jayden or his condition b/c of the HIPPA law) but about why she wanted me to call and schedule the EEG and who to call and that the Dr wants the EEG done asap. Then she told my mom to tell me that she apologizes if she made me feel uneasy or upset. I don't know what to even say to that. We will see if she treats us better at the next appt, which BTW, is not even scheduled. I will make sure to let the Dr know about the issues with the nurse b/c my mom thinks the Dr may not even be aware of the situation.

On a positive note, we took a 4 day trip to Panama City and Jayden didn't have a single seizure! We had a few "scares" where he would get over heated and we'd have to rush to get him cooled off, but he never had a seizure and we were are so grateful! He was even able to play and enjoy himself on the beach (we had to stay close to the water though). We are hoping for many more family vacations like that one :)

Annual Family Vacation 2010, RECAP

We've been going to Orlando each summer in August since 2004...Mom, Dad, my niece, and Mike and I. Once Jayden was born, he joined in on the fun. And this year was the best yet! But, of course, as with any vacation there is always The Good, The Bad, and The Ugly!

Let's start with the Good...

WE HAD FUN FUN FUN!! The drive to Orlando and back was AWESOME! Jayden was so well behaved that we hardly knew there was a 3 yr old in the truck. This was completely opposite of last year. Last year was AWFUL, but of course we had no idea what was truly going on with Jayden and were still fighting medical Drs to find out. This time around he watched his movies, got out at rest areas to use the restroom, and was just all around a great traveler. Once we got to the resort, Jayden had to have said "Wow" about 50 times. He was truly amazed and he showed that. We went to Universal Studios, Islands of Adventures, Magic Kingdom, Epcot, and Hollywood Studios. We also did a day at Blizzard Beach Water Park. Jayden met and took Pictures with Spiderman (and the other Marvel comics superheroes),Mickey and the Gang, and several other characters that he knows and loves. He is exactly 40 inches tall so he was able to ride on a few rides. His reactions were PRICELESS! On the Spiderman ride, I wish I could have had him on video. He was helping Spiderman to fight crime and had his jaw on the floor the entire time b/c he really thought he was in the scene. And we took him on a Jaws ride. We didn't think he knew anything about Jaws, but when we got to the attraction he pointed to the shark and said, "Jaws!!" Then we remembered that he watched Jaws at on of the gym's dive in movies. He has a superb memory. He was so into all of the action and he does this thing where when he gets shocked he shakes his head as if he's doing a double (or triple take) and holds his mouth open in shock. He had so many people laughing. The parks were very accommodating to Jayden's needs as well. We were given a red sticker to put on his stroller to allow us to use it as a wheelchair so we only took him out when we really needed to. For the most part, he was able to stay in the stroller and the park staff was very kind about it. This helped him alot b/c at one point (going to meet Mickey at Magic Kingdom) I didn't use the option b/c I thought he could handle the line since it was inside in the AC and within 10 minutes of waiting, he started hyperventilating. He still has the fear of large crowds and I'm sure the noise of all the people talking was overstimulating to him. After that, I decided to just use the pass to it's full advantage. Jayden was also accommodated at the food areas as well. One day he enjoyed a hot dog on a tapioca bun. Pure joy! This was truly his magical year!

Now how about the Bad...
Of course, the seizures :( We definitely didn't expect to get through this trip without a single seizure. We actually went prepared for them. We had BOTH of his Diastat meds in case of a seizure lasting 5 minutes or longer. We had an ice pad for his stroller, two fans, and a stroller parasol. So many people commented on his get up, lol! We had ice packs in case he overheated, his noise reduction headsets in case he got overstimulated by the noise, his blanket for security, and lots and lots of water. We were also prepared to leave the parks at anytime for him b/c we knew that he'd been having issues with the heat/sun lately. However, his seizures all happened outside of the parks, in air conditioned areas. The 1st one was bright an early Sunday morning, before we even left the resort. Mike and I were packing his bag, my mom and dad were in their room, and Jayden was on the couch with my 13 yr old niece. He went from being a speed demon to sitting on the couch whining just like that. I never seem to panic when he does this, I have no idea why. I went and held him for a while and he was just acting sleepy so I figured he was just tired from the long day we had Saturday. I sat him on the couch and went to finish packing his bag. They were watching the Disney channel and I heard Jayden say "I'm scared". He says this before a seizure, but it still didn't register to me b/c I wasn't looking at him. I heard my niece say "You're not scared, this is a cartoon!". He kept whining saying he was scared and then he got quiet (I thought my niece picked him up) and then all of a sudden was a full on cry, as if he'd fell and hurt something. I went to get him and immediately knew he had a seizure. I didn't want to scare my niece so I just picked him up and carried him to our room where he immediately passed out. My mom came out after a few minutes and when she saw him she asked what happened but she already knew. I told her he had a seizure and my niece came running in very concerned. She said "He just started screaming, I didn't know it was a seizure." It's so hard on younger kids to understand that seizures are not going to always be extreme like the ones they see on movies. I told her what to look for in case he was with her again and we were not in the room. A major sign would be him whining and saying he's scared. I assured her that it wasn't her fault and he would be okay. He woke up after a good 45 minute deep sleep and then we headed to the park to see Spiderman and the rest of his day went extremely well! Mike and I were sure that this would be the only seizure b/c he has been having one a week for some time now. So we were both glad to "get that out of the way", but we were wrong. Mon-Wed went GREAT and Jayden was having so much fun! Thursday was Mike's birthday and we had reservations at Chef Mickey's for breakfast. Jayden woke up feeling warm. I left his thermometer at home, but my mom and I both agreed that he felt warm enough to need some Motrin, so I gave him some before we left for breakfast. He was very quiet and drowsy on the ride to Chef Mickey's. My dad and I kept saying "I don't think today is gonna be a good one for him." We got to Chef Mickey's and he seemed to perk up a bit, but you could tell he still wasn't feeling well. He only wanted to sit on my lap. When his food came out, he did eat some, which I thought was a good sign. His eyes had a very far away look to them though and he kept staring off into space. When Mickey and Minnie came to the table he hopped out of his seat to give them hugs, but his coordination was WAY off. He still wanted to see them though. He'd give hugs, pose for a picture, and then walk back to his seat and finish eating. And can I just say that we found out that Jayden has a huge crush on Minnie?? He gives her the sweetest look and the smile that shows both of his dimples. That was no different on this morning and he even followed her to give her one last hug before he came back to the table. I went to get him some more sausage links and when I got back to the table my mom was holding him. He was moaning in her arms, just very uncomfortable. Then his moaning got loader and suddenly stopped. His eyes rolled back and he tensed his limbs. It was as quick as 3 seconds but it exhausted him :( He was in and out of it for the rest of breakfast. He was still whining and pointing at Goofy and Pluto b/c he wanted his picture with them. I held him in those pictures and then when I sat back down, he crashed. The chef (who fixed Jayden's GF meal) came out to check on him and asked if we needed someone from first aid, but we figured he'd be ok. We sat at the table a while longer so that he could rest in the AC before we went out in the heat to either go back to the resort or head to Hollywood Studios. It's hard to tell with Jayden b/c he can pass out after a seizure and wake up like nothing ever happened and trust me you'd hate to be the one trapped in a resort with him once he gets up b/c it's like his little body has completely recharged and he cannot stop! He slept for about an hour in the restaurant and in the hotel lobby. When he woke up he was talking and pointing, even responding to questions. This usually means he's okay, so we caught the transport bus to Hollywood Studios. When we got to the gates he said "YAY!! Disney!!" We got a map and we 1st went on the movie ride (it's like a moving theater that rides you through different movie scenes). Jayden LOVES the movies! He got in his seat, which was right behind the driver and he pointed to himself and said "Hi, I Jayden Johnson!". He was SO ALERT on this ride and his face of shock had returned. At one point our driver got off and played in a scene and another person hopped on and "stole" our moving theater. Jayden looked at her with his eyebrows down and said "HEY!!" He was completely there so we had no reason to think that he was not okay. When the ride was over he stood up and clapped :) After that, we headed to the Muppet 3D show. We were trying to take advantage of everything that was indoors in AC until later, just in case. Well, in the Muppet 3D show, just in case actually happened. We used the handicap entrance (and can I say how guilty I felt pushing my child in a stroller through the handicap line with kids who were in wheelchairs??) and sat in the accessible rows which were right near the exit. He sat on my lap and then once the show started he got clammy and started crying. He kept saing "Ouch". I asked what hurt and he was very uncomfortable. His whining turned into crying. Sometime he throws up after a seizure so I thought maybe he was about to through up after his seizure he had that morning. I kept saying where's your bobo and he pointed to his head :( Then he had another seizure. Mike picked him up and sat on a bench against the wall to calm him down. Then we put him in his stroller and went straight to first aid. They gave us more ice packs and let us sit in there with him for as long as we needed. We decided that going back to the resort at that point wouldn't be the best option b/c it would mean bringing him in the heat to wait for the Disney transport, taking him out of the stroller to get on the bus, walking in the heat to the truck, etc. It was just too much stimulation when what he really needed to do was rest. So we sat there with him. First me, then my dad, while we took turns taking my niece around the park. She wouldn't smile though. She didn't want to go around the park, she wanted to be with Jayden. In the 1st aid center, another mom commented on how he was living the good life. Little did she know that he was actually suffering. We weren't in there just so he could get a nap in. He slept in the first aid center for about 30 minutes then woke up and watched the cartoons. When we got there to check on him my dad said that he was up for a long time but wasn't talking. That concerned us b/c it had been nearly 2 hours since the seizure. So I started asking him questions. He never answered any. Then I asked him if he wanted ice cream and all of a sudden he says "Let's go!" LOL! We took him to get his picture taken with Buzz and Woody and by the time he was done with that, Jayden was back and ENERGIZED. He was not listening, he was touching everything, he was singing, and he was begging for everything he saw! we went inside to the playhouse disney show and he was dancing all over and screaming "OH TOODLES!!" Yep he was refreshed!

Oh and there was lots of Ugly on our trip as well...
First lets talk about the Harry Potter ride!! The ride that many people waited in line for nearly 8 hours at a time when it first opened. We had a fast pass so we didn't wait nearly as long (maybe 10 minutes tops) but little did we'd be on the actual ride for well over an hour. We were riding and all of a sudden the sound stops and the rides comes to a stop. An announcer comes over the loud speaker and says something about technical difficulties. I thought it was a part of the ride as we were hanging there leaning forward with all of our weight on the chest bars. Then about 3 minutes later we are still sitting there and the lady says something else about technical difficulties and that they will be turning on the lights for us and moving our seats to a more comfortable position. 10 more minutes pass and then she comes on and says "I apologize but we are not able to move your seats at this time. We will be sending an emergency crew to evacuate the cars one by one. This evacuation process could take close to an hour to complete. Thank you for your continued patience." WOOOOOOW!!! So we just hung there. At first we tried to make light of the situation and we told jokes and got really acquainted with the guy who was in the car with us. But after hanging like that for over 30 minutes and no rescue in sight, panic started to sink in. My mom was getting a headache and I was getting claustrophobic. I used my mind to ward off two panic attacks that almost set in. I actually had to close my eyes and think of my somewhere totally different. It was AWFUL! But to make matters worse, when we were finally rescued after hanging there for over an hour, the ride staff was VERY NASTY to us. One person yelled at a rider for taking pictures with his phone. Then a lady yelled at me when I stopped to wait for my mom who was looking very sick and could barely walk straight, "THE EXIT IS RIGHT THERE KEEP IT MOVING!" No apologies or anything. We went to guest services and complained and they issued us an extra day in the park. We couldn't use the extra day but at least they did something about the matter. When we got back to the resort we found out that the Harry Potter ride has these technical issues very often. Just go on youtube and search for "Stuck on Harry potter ride". You'll find several videos. I guess the person who yelled at the guy for taking pictures didn't have the opportunity to catch all of the videos being made, LOL! Surprisingly, we also ran into some ugliness at a Disney Park. We were at Epcot and all of a sudden there was a huge downpour of rain. A huge crowd of people were running to the building to get out of the rain. Of course you have to expect to get bumped into. I was running and pushing Jayden's stroller when I mistakenly ran up on a woman's leg. She stopped and turned around and looked at me with the death stare. I said "I'm so sorry I'm just trying to get my son out of this rain." She continued to stare and wouldn't let me move and then I ended up being pushed by the crowd behind me and the stroller hit a man. He proceeded to turn around and yell at me in Spanish. It was a huge, ridiculous mess. I simply said "What do you expect to happen when a large crowd of people are running to the same place at the same time??" Goodness!! And finally, on our last day at the parks, Jayden's stroller tire went flat. It would not hold air in it so we had to use one of the rental strollers from the park. Poor Jayden was SO uncomfortable. Who wouldn't be?! Those stroller are awful! I was so upset, but thankful that this happened on our last day.

Looking back, I've learned so much on this trip. First of all, I don't think I had fully accepted just how bad Jayden's epilepsy is. I thought I did, but truly I hadn't until I looked back at the pictures on my camera. On the days where he was not having seizures, he has so much life in his eyes. On that day at Chef Mickey's, even before the first seizure, there was nothing. He just had a blank expression in every picture. Even if he smiled there was nothing behind the smile. That broke my heart. The seizures truly affect him in ways I never seemed to notice. I don't know why I never noticed it. Maybe b/c I want to wish it all away. But it is there and I need to accept it. Sure, it could be worse. He could be wheelchair bound like so many of the kids I saw at the parks. But the truth is, I should not feel any guilt for pushing him through the handicap entrance b/c he truly needs the accommodation. I always tell people that the seizures don't scare me much, I just feel really sorry for him when it happens b/c he's scared. Perhaps I was in shock or denial about ti all, b/c after this week, I am nervous and scared about them. I don't want him to have them anymore b/c I don't want to see him with that blank expression ever again. I don't want to imagine just how scared he must be or how much it must hurt him. I want them to stop. I've also realized just how much he NEEDS a stroller. He's 3.5 and 40 inches tall. You'd think that by now we could just toss the stroller, but I saw how his coordination is thrown way off well before he even has a seizure. There are days when I'm dragging him out to a store with me and he falls in the parking lots, or cries and says his head is hurting, and then later he has a seizure. He knows when they are coming, I don't. I think keeping him in a stroller would help both of us b/c I know how hard it is for me to walk when I'm dizzy and I also know how hard it is for me to have to carry him after he has a seizure and I am miles away from the truck. The hard part about that will be finding a stroller that's big enough to accommodate him, yet small enough for me to keep in our car or truck whenever we go someplace. I have learned that I need to carry a thermometer and Motrin with me at all times. He doesn't normally have febrile seizures (actually Thursday was the first time he had a fever before having a seizure), but I definitely need to make sure his temps are not going over 99.5 since he does have the seizure disorder. I also realize just how much we need this new neurologist to find out why he is having so many seizures and how we can better control them. We need some answers b/c he is still suffering. Sure the seizures are only 3-5 seconds long, but we have no way of knowing how strong and painful those 3-5 seconds are to him. They are obviously very strong b/c he passes out after. And not to mention how horrible he feels well before the seizure even happens. We need answers and I pray that this Dr can help him. we meet with her on the 26th of this month. I've learned that it's time for me to accept that my child has a disability and I need to make changes in our life to make his life easier. I can and I will do it for him. He deserves it.

All in all, our family vacation was a huge success!!

What a weekend!!

We had a wonderfully busy weekend over here! One of my best friends turned 30 on Sunday (wow, we are all turning 30 this year!), so she threw herself a birthday party on Saturday. Friday, I helped her run a few errands while Jayden stayed home with Daddy so he could take a nap. Friday evening, I picked up Jayden and we headed back to my friend's house to finish fixing the food for the party. I had a great time with her and Jayden played like such a big boy with her nieces. Saturday, we headed to the party and I got a speeding ticket on the way there! Great way to ruin my day :( I was actually going with the flow of traffic and failed to keep an eye on my speedometer (am I the only one who does that??), but when I saw the cop car, I glanced down and saw that I was speeding so I slowed down and I guess it made me quite obvious...The cop pulled me over and made me get out of the truck. Fun times. I took my speeding ticket and continued on my way to the party. Jayden was a tornado, to say the least. He wanted to play outside, but as soon as he got outside he would realize how hot it was and come right back inside. Then, once inside, he decided he wanted to go play outside. This went on the entire time! Over and over and over. He eventually got his little toes closed in the door :(

As you know, b/c of Jayden's Celiac Disease, birthday parties can prove to be a bit rough for Jayden as far as food selection goes. And a biggie is always the birthday cake! What kid doesn't want cake?? Jayden, however, seems to be getting used to our routine. Sing happy birthday and then come to mommy to get his gluten free cupcake. He sat on the side and devoured his cupcake. After a while, we had to pack up and head over to the next birthday party. We got to this praty just a few minutes before they sang Happy Birthday. I lost sight of Jayden and when I found him he had helped himself to a plate and a fork and was pacing around the cake table! lol!! And then it hit me...DAMMIT! I'd only packed ONE gluten free cupcake. I ran to ask a friend of mine if they had any popsicles, or anything as delicious as that cake (in a child's eyes) that would appease Jayden, but all she had was ice cream. I believe that Jayden is lactose intolerant, even though the dietician says it's not likely, so I carry around lactaid supplements just in case. I ran to his bag for the lactaid and there weren't any in there! He was in line waiting for cake! I had no idea what to do other than to leave the party that we had just arrived at. I decided to give him just a spoon full of icing from the cake (buttercream icing made with powdered sugar) and a scoop of ice cream, praying that the dietician was correct. He devoured it, and was satisfied and enjoyed the rest of the party.

Sunday morning he woke up complaining about his tummy. This is usual for Jayden b/c he still has constipation issues and the day that he finally has a BM, his tummy hurts. But this was different. He was clammy and he would cry and run to find me with his shirt held up saying "Tummy!!!" I would kiss his tummy and he would walk away still, looking sad. The pain would come in spurts and hit him all of a sudden so I knew it was stomach cramps. He was miserable all day and could hardly eat anything. That evening my husband and Jayden came with me to an outdoor photo shoot and Jayden was going to feed the ducks while I did the shoot. Well when we got there, Jayden was crying and moaning. My husband took him out of his seat and laid him across the back seat and rubbed his back. A few minutes later, Jayden moaned and rolled over to his hands and knees and lets just say that in the end, I had to throw away a pair of shorts, underwear, a towel, and a blanket that we were using to cover his neck from the sun! It was bad, but Jayden felt better immediately. I had packed an extra set of clothes and a pullup, just in case, so he didn't have to run around bottomless! Monday, he still had a few stomach cramps, but he's been much better since then and is at summer camp today. I really do believe that it was the ice cream that hurt his tummy so badly. Sometimes, you just have to follow your gut.

Blastball

It's soccer for tots :) We signed Jayden up and his first practice was this evening. My husband had been working with Jayden to kick the ball, so he was ready for action. And he looked darn cute in his shin protectors and soccer socks!

We got out there and all of the kids (there are 7 on the team) were kicking their balls about. Jayden took his ball on the field and joined in. Then the coach had the kids to line up on one end of the field and have a parent on the other end, and the kid was to kick the ball to their parent. Jayden had a hard time waiting for the signal to start, but he made due. After that, the coach had the kids to put their balls aside and they were to only use 1 ball. The kids had to line up and wait their individual turn to kick the ball. We knew Jayden wouldn't be able to do this. It would mean that he HAD to interact with the other kids and he no longer had control over the ball. He didn't like that and any attempt to make him wait in line started a tantrum. We have him out there to have fun, so we didn't force him in the line. He wandered to the field next to us and just sat there and watched the other kids play =( It was tough for me to see the other kids having fun and hear their parents cheering for them and then look over at my son who has distanced himself from the team. We gave the coach a head's up on Jayden's condition and he did his best to not make Jayden feel left out, but with a team of 7 players that's tough. When they simulated a real game, it had to be 3 against 3, so one child would always be left waiting their turn and of course it was always Jayden b/c he didn't want to interact with the other kids. We know he will get better and we know that this is good for him so we won't take him out. I just hope that it gets easier for me to watch...

Orlando 2009

This year's trip was very different from last year's, in several ways. First of all, I can see why they charge admission once your child turns 3 yrs old. They are so aware and SO EXCITED to see their favorite characters. Last year, Jayden was only 18 months old, so while he did look at the characters, he could have cared less about them b/c he truly didn't know who they were. This year, he was just over 2.5 and his face would light up when he saw certain characters like The Little Einsteins, Handy Manny, and oh the joy in his face when he saw Lightning McQueen!! Too bad the motor noises scared the crap out of him though! That was another difference that the year made...Last year, he didn't really know the characters, but he also didn't mind standing bext to them for pictures. This year he had huge anxiety. I expected it though b/c of his issues. In the line for the picture with Handy Manny, Jayden was having one of the hugest fits and the lady helping the photographer asked us, while we were waiting, if we really wanted to try and get his picture taken since he seemed so upset and afraid. I told her, "Oh it's just a mood swing. He'll be fine once it's time for his picture." I could read the "yeah right" all over her face! LOL! But when his turn came he gave Handy Manny high five and smiled for his picture. The lady was like "WOW, you really know him!" Um...yeah. He's my child!

We went to three different amusement parks. All of them gave passes for Jayden but they weren't all exactly accomodating. Islands of Adventure and Universal Studios were the best at accomodating him. They allowed him access to the rides through the fast pass line and they also allowed me to ride all of the rides with him, even the ones that had maximum height limits. This gave me the chance to prepare him for the end of each ride b/c transitioning is not on his idea of fun. It also got us through the park much faster, so by the time Jayden started to get over stimulated, we were done. We went to Universal Studios 3 days and it was great.

Disney Hollywood Studios gave us a special needs guest pass to allow Jayden to use an alternate entrance, but only where available. Well...only one child's ride seemed to have an alternate entrance. Seriously. He was only able to see ONE disney show on stage. We showed the lady at the door his pass and she told me there was only one entrance and that we'd have to wait in the line with everyone else. I told her that he had extreme anxiety in tight crowds and asked if there was anyway she could let us in before the crowd, and we'd even sit towards the back. She said no. So we attempted to stand in line and Jayden abruptly had a fit. It was awful. He kicked and screamed and fell out and banged his head on the concrete :( The lady came over and actually stopped the end of the line (where we were) from moving!!! She rearranged the rope and then came up to me and said "This is so you won't have to walk so far... WTF?? We got inside and had to sit in the crowd and Jayden was glued to my lap b/c he was so afraid. He did perk up a bit when he saw Mickey on stage and he even jumped up a few times and yelled "Oh Toodles!!" LOL, but he wasn't his happy, dancing self. I knew he would have enjoyed it more had he been accomodated better. At one point, I looked behind me and saw a line of people in wheelchairs so I knew there was an alternate entrance, but since Jayden isn't physically disabled he wasn't accomodated. I knew it was going to be a rough day for him, but we decided to try and use his pass again to get him to see the Little Mermaid on stage. Well that was worse. The grumpy old man at that line immediately turned me around and told me to park the stroller, ignoring my question of any alternate entrances. I said, or attempted to say "Sir, I will park my stroller, but before I take him out I need to know if there is an alternate entrance b/c he has autism and won't do well waiting in this crowd." Before I could finish what I was saying (while holding the guest pass in my hand) he told me, "No. There's only this one entrance." My sister was there as well with her 2 yr old and they waited in the line and when she came out she told me that there were wheelchairs AND strollers in the back row. So there was an alternate entrance, but again, my baby is not physically disabled so he couldn't be accomodated. I can understand that there are probably people who abuse this system b/c the guest relations employee didn't even look at Jayden's Drs note. He just took my word for it. But really, I would give anything to be able to wait in a long line with my baby at theme parks. I'd give anything to not NEED that special needs pass. I'd give anything for my baby to be able to have a great time at Disney World. I would honestly wait in line for hours. I'm not asking to skip a line b/c I'm hot or lazy. I'm asking b/c I want my child to enjoy himself. I was surprised that the attendants at Disney didn't understand that. So the rest of the day was spent with him meeting characters, riding the one ride that accomodated him, and we did the character dining at Hollywood and Vine. I must say that they were VERY accomodating to his celiac disease. VERY. And since he was under 3, his meal was even free. The cook came out and walked me along the bar and told me what he could eat from the bar and what to avoid. He also told me to use our clean utensils from the table instead of the prongs on the bar. There was a huge variety for Jayden to choose from but he's incredibly picky so he just at some baked chicken. The chef brought him out some tapioca bread that he enjoyed as well. He was very cranky at first b/c he was overstimulated from the above events and there was also a huge storm that came through minutes before we went into the restaurant and the loud thunder had him on edge. The characters came by the table every now and then but Jayden wasn't in the mood. They stopped every few minutes and would sing and dance in front on the restaurant. I convinced my 12 yr old niece to go up and dance with the characters. It was the Little Einsteins and JoJo and Goliath, so it took alot of convincing to get that very cool 12 yr old up there dancing, but I told her that if she danced, I'm sure Jayden would dance as well. Well, she went up there, and he slowly followed! I have it on video and will share it with you later this week :) After that fun, the chef brought out Jayden's dessert. I fully expected a prepackaged, gluten free cookie, but it was so much more than that. My baby had a brownie tower with a scoop of chocolate ice cream!! OH MY!! The brownie was gluten free and the ice cream was tofu ice cream. Jayden LOVED it!! At first he looked at the brownie and then looked at me waiting for me to tell him he couldn't have it. But when we gave him the spoon, he went to town! The chef even gave us an extra brownie to take with us. That's when the fun began. Jayden was ready to party! The characters came around the table again and Jayden played peek a boo with them, kissed them, hugged them, and gave high fives. And then the characters performed again. Jayden had been clenching Wayne the entire time, but this time, when he started to dance, he ran back to the table and threw Wayne at the chair!! It was too funny. I felt sad for poor, neglected Waybe, but I was so proud of my boy! I can't say enough about the accomodations at Hollywood and Vine. It made the entire trip to the park worth it. Oh and the 2 hour nap he took in his stroller after lunch helped as well! LOL!

The last few days we visited Busch Gardens in Tampa. It's not as crowded so we didn't expect it to be as overstimulating to Jayden. Hmmmmmm.... Well, they issued him a special needs pass for the rides he was tall enough to ride, saying that he could use an alternate entrance. Well, there are no alternate entrance for the kiddie rides there. It wouldn't have been needed anyway though b/c the lines were not long at all. The lines were the least of our worries. Here, they wouldn't let me get on the rides with him, even with the pass or with the explanation that he has autism and it will be very difficult to get him off the ride once it's over. So we foolishly decided to go for it anyway. First the little kiddie go karts. He was so happy to ride. When the cars stopped, he stuck his fingers in his ears. I ran to the gate and told the lady not to try and take him out, to let me in and let me get him. She still had to go up to him though to unlock his straps and he lost it. He started screaming a bloody scream, kicking, flailing, and nearly foaming by the mouth. We tried to quickly bring him to the next ride. They wouldn't let me ride with him but they let my 12 yr old niece ride. Poor thing, I could see her trying to prepare him for the ride to end. He had another fit, even worse than the first. The people were staring at him like he was a circus freak. We ran to another ride with him and I don't know what this girl was thinking...I can only assume that she saw how horrible he was acting once the ride was over so she didn't want him on her ride, but she stopped me at the gate and said, wait I don't think he's tall enough. It was ridiculous b/c he walked past the height bar and was way above the red line. Not to mention the fact that all the rides in that one section have the same height limit. So she made me hold him against the bar. Of course he had a fit. Add fuel to the fire why don't you?? Well he was able to get on and they let his cousin ride with him again. She tried again to prepare him but he did the same thing. This continued until I just couldn't take the people laughing and staring at him anymore so we left that area and my mood was very foul at that point. He continued to be cranky and upset. My mom decided I need to get on a roller coaster for stress relief. We got on and the entire time I was thinking about Jayden. I looked at my watch and realized that he MUST be hungry!! We stopped and ordered him a hot dog with no bun (made sure it was a safe brand for him) and he DEVOURED it. His entire mood changed after that. SIGH. I was so upset for the remainder of that day. How could I not know that he was hungry?? My mom kept telling me it wasn't my fault. Jayden had been denying any food I was offering him and he does not yet know the feeling of hunger so he won't ask to eat, especially when he's thrown off of his routine. So I would have to watch the clock and then hope that I have something that he is in the mood to eat at that time. It's hard. But everyone pitched in from that point and watched the clock. He still had issues with transitioning, but for the most part, he did well. But he did still have huge fits of rage. Enough to make me cry the last two days of our vacation.

So overall, the vacation was awesome! Jayden had fun in the beginning and we brought home lots of memories from the trip. Tomorrow I will be on the phone with everyone involved in the promises made to restart Jayden's early intervention services. I'm done with being nice to them. Actions speak louder than words, I see, so tomorrow I'm taking action.

And the bickering continues...

As you know, from my last blog post, my niece and nephews are here for a week. All day long they pick with each other and argue back and forth. Last night, they went to the room to go to bed for the night. I heard the bickering and soon their little voices started to get louder and louder. So I went to the room and asked what was going on. My 9 yr old nephew yelled "SHE WON'T HELP US PRAY!!!"....

HAHAHA!! Oh yes, I have heard it all!

Doing a happy dance

Woooo, I have had such a WONDERFUL week!!! Sure we've had a few incidents, like Jayden waking up from his nap and opening his bedroom door, then opening the front door...and walking outside into the street!!! I just so happened to be in the guest bedroom and saw a little boy out of the corner of my eye. Thank goodness for being in the right place at the right time huh? We now have doorknob covers in place. My husband and I have both been locked out of the house this week by the same little boy! Thank goodness we both were home at both times to let each other back in! LOL! Oh and the said little boy has also picked up a bad word and uses it appropriately. But hey, it's all typical of a 2 yr old little boy. Certainly things we can laugh at, but we try hard not to laugh in his presence!! Now on to the good (GREAT!!!) stuff!

First of all, I cannot stress how happy my husband and I are that we can finally have dinner as a family. I actually look forward to dinner now. In the past (very recent past!), I admit to going to bed without dinner b/c I would lose my appetite over the screaming and crying coming from a child who simply did not want to see any other food on his tray other than french fries. It was a very stressful situation. Like I said in my last post, he is really accepting his gluten free foods now. He loves his bread and I love to sit there and watch him eat it with a smile on his face! It makes me so happy to see him enjoying bread again b/c I know he loves it. He now comes running when he smells something cooking in the kitchen. He runs straight to his booster seat and yells "HELP ME!!" because he wants to sit down and get ready for his serving. This is an entirely different child people!! The other night I was getting ready to put some cinnamon rolls in the oven for my husband and I. We always have to have our snacks at night after Jayden is in bed. So I thought he was in bed, but he came running to give me a kiss goodnight and just as he ran in I was busy being baffled by the fact that there were eight cinnamon rolls in the can, when usually there are just 5. So he ran in and I said "Eight?!?!" Jayden saw the picture of the rolls on the can and immediately said "Mmmmmm, EIGHT!!!" and ran to his booster!! LOL!! I put the "eights" back in the fridge and told him we would eat them tomorrow. Well, all week he's been asking for eight, so I'm on the hunt for some GF cinnamon rolls for him. HEHEHE!! He's too cute.

Yesterday, we drove out to Birmingham to spend the day with my best friend and her husband and their 6 month old son. I also planned to take pictures for them at theBotanical Gardens. We did not expect Jayden to be on his best behavior and we were prepared for the worst. However, my best friend is an occupational therapist and is used to dealing with kids with special needs and behavioral problems. We got to Birmingham and met up with my friend and we headed to Red Robin for lunch. I sat on the end of the booth, prepared to walk Jayden around the restaurant and to the game room area once he started to act up. Well, I never had to leave the booth. I actually got bored waiting for him to act up! He took pictures with my camera (cute pictures too!) and everytime he happened to get a person in the picture he'd yell "I got you!!" very loudly. But it wasn't disruptive at all, so we let him have his fun. Besides, we were in Red Robin and they love kids. Jayden had the grilled chicken on a stick and when his food came he ate quietly. He chewed on the chicken and then would spit it out. I think it was too tough, but the fact that he tried eating it was enough for us. He devoured his fries of course and impressed my BFF by showing her all of his signs he uses during dinner time, and how politely he uses them...he makes sure he wipes his hands off on his shirt before he signs! It's not polite to sign with dirty hands you know! lol. We were even able to sit for about 20 minutes after finishing our meals and just chat...UNHEARD OF!! He didn't have one.single.fit. I was one proud momma. So then we headed to the Botanical Gardens for pictures. My husband had Jayden and they stayed off to one side playing while I took pictures. We worried that Jayden would just hop in front of the camera and cry for me if he saw me doing anything without him. Well he showed us...he actually assisted me! I am often found lying on the ground when I take pictures of babies. Well Jayden saw me on the ground, squealing and calling the baby's name to get him to smile and Jayden felt that he could help me. He ran up beside me dancing for the baby, sat on my back and called the baby's name, and even said "CHEESE!!" LOL!! He was the PERFECT assistant. You should see the eye contact I got from the baby once my little helper joined me!





After the pictures (which were a huge success) we headed to TCBY. Jayden had an orange sorbet with sprinkles and he was in heaven. By now he was getting tired though so he exhibited some of his selective hearing traits...hehehe! But never did we have to put him in a time out or tape him to a seat ;) Once, when the baby got fussy, Jayden ran over and started teaching him sugn language. Oh boy was that cute. He really wanted the baby to sign "dance" and to dance at the same time. That takes a bit of practice though.

When we hit the road to head home last night, I had a renewed sense of peace...and patience. This wonderful week with Jayden was just what I need to refill my cup of patience. This may sound mean to you if you haven't had to experience what I experience 24 hours and 7 days a week of bad behaviors, but now when he looks up at me with those sweet eyes, I can remind him of what a good boy he has been lately and how proud I am of him, as opposed to smiling at him but crying on the inside b/c of what a bad boy he had been. My husband and I have been talking about how well he's been behaving all day today. I love it!! The Dr was telling us that we would never be sure how much of Jayden's autistic behaviors have to do with the untreated celiac disease, but if this is not some type of phase, I would think it's safe to say that it had alot to do with a bad stomach. Don't get me wrong, he still has his issues, mainly the social anxiety and although he is talking more, he still has a significant speech delay, but that's where the other good news comes in...

We received a letter in the mail Friday stating that our insurance approved us for the ECHO program, which will pay for Jayden to receive ABA therapy here in MS! We were worried about that b/c they will only cover us until my husband retires in Jan and we were having a hard time getting the last of the papaerwork filled out to get the ball rolling on the insurance coverage. In the letter they state that Jayden's insurance is officially active and we have 90 days to complete the paperwork (which I know we will have completed by then), but for now he can start therapy asap! This makes me so happy. I know he will be okay b/c I'm already seeing positive strides from him with just the strict diet change. We are finally making our way out from behind these dark rain clouds and starting to see some sunshine :)

A few more things...

Well, I didn't have to drive to Laurel to see the derm afterall. The Dr called in an ointment that should help with the rash. I have to discontinue using the steroid spray for 3 days and then restart it and keep an eye on the rash. If it continues to get worse then I'll go in to be seen.

Did I mention that J's new favorite phrase lately has been "Ugh NAGGY!!" (ugh nasty)? Well that and "HELPMEEEE!" LOL. And he's really been trying hard to put two words together now and doing an excellent job at it. Well today I heard him in the kitchen playing with the dogs. Our male schnauzer is getting over a UTI so he usually has his leg cocked while trying to soothe his "stuff" if you know what I mean. I'm in my closet when I hear Jayden stop playing with the dogs and say "UGH, NAGGY!!! PEE PEE!" My dogs are housetrained, so I knew what had just happened and I hope J doesn't have nightmares about it! lol!!

Finally, today marks an entire year that my husband has gone without a cigarette. I am so proud of him, and since he has just discovered facebook, I'm pretty sure he won't be visiting my blog today so I can tell you that J and I have a really nice surprise for him in a few hours!! ;)

Camera Shy

Of course you all know that I carried my camera with me to the beach, hoping to get some shots of J on the beach. Some that I can frame in our home. I've come to realize that he is the world's most stubborn child when it comes to taking a picture of any sort. I never ever have such a hard time with clients' children. Even if they are incredibly shy, I can always get eye contact in some of the pictures. With J, I can't even get him to look in my direction. He will look at me and smile with those bright brown eyes, but as soon as I have the camera pointed at him he refuses to look my way. Doesn't matter what I say and trust me I've tried it all... "Look Elmo is here!!" "Is that Spongebob I see??" "Do you want some ice cream?" " Oh look at how silly mommy looks (and sounds!!)" He will look at the ground the entire time.

So, there will be no cute pictures of J on the beach. I'd be lying if I said I wasn't dissappointed. But I have some SLAMMIN scenery pictures and some new shoes :D

Memphis Trip

So, our trip to Memphis was so nice, relaxing, and fun! We stayed in a little suite on the Navy base and we visited the Memphis Zoo, which is amazing, had some great BBQ at a famous place called Rendezvoux in the alley, and it's truely in an alley. I was startled when we walked past a guy sleeping on the sidewalk. I forgot that we were downtown. I thought it was a dead body :( We also went to the famous Lorraine Hotel, where Dr. Martin Luther King was murdered. It was so nice to be able to spend time with my hubby, away from all of the everyday stress in life. No work, no video games, no internet, just the three of us. And then when J fell asleep, just the two of us. Well needed break! Here are a few pictures from my p&s camera. I have more on my big camera, but I can tell you it will be a while before I get to those b/c I have two shoots coming up, one tomorrow and one Saturday.

J enjoyed playing hide and seek in the hotel. He's an excellent hider. We searched for hours ;)








The two HUMONGOUS knots on his head are simply mosquito bites...poor guy

See ya later!!

I'm packing up our bags, and after lunch, J and I are hitting the road to meet Daddy in Memphis. Daddy is so excited and already has plans lined up for us once we get there. Memphis zoo, BBQ, sightseeing!! Should be fun and the weather is really nice. We'll be back on Sunday...or maybe Monday b/c Daddy is off from work :D Have a great weekend everyone!

Pumpkin Patch

Saturday, we took J out to the Pumpkin patch to pick his pumpkin. This particular pumpkin patch was about 30 minutes away from home, but it was well worth the ride. Once we got there we got straight onto the hayride to ride through the farm and get to the pumpkin patch. On the way there, we saw some really cool sights. First we saw April, the Zedonk! She's a cross between a zebra and a donkey! LOL!



We rode past some regular donkeys who were really friendly and came up to the tractor for the kids to pet them. We also saw some goats, cows, and a pond FILLED with Mississippi catfish! It was really cool. Next we rode past some trees with little orange things growing on them.



We were told that these were pumpkin trees and that this is where they get the pumpkins for the pumpkin patch. I find that hard to believe, but I've seen stranger things...like a zedonk!! LOL!

Finally we arrived at the pumpkin patch and I have to say that I was impressed with the variety of shapes and sizes of pumpkins available for the kids. Last year, we took J to the AG museum's "pumpkin patch" and the pumpkins were all tiny. J was unsure of the pumpkins at first.


But it didn't take him long to start his search for the perfect pumpkin.


Hey Mom I think I found one!!


Yep, I like this one!!


So we grabbed his pumpkin and attempted to get him to take a picture with it. This didn't go so well b/c he really wasn't feeling too good.


These next two pictures make me laugh b/c he was totally done with taking pictures and you can see it all in his face!! LOL! He asked me to pick him up, then turned to his daddy with the same look on his face!



We took him down and my friend found something to make him smile, even if only for a few minutes...



I was so proud of him for holding on like a big, strong boy! After that, we took him to a little straw maze.



Overall, we had a great time. Jayden fell asleep in the car 5 minutes into the ride home, and actually stayed asleep once we got home. We brought home 3 nice sized pumpkins and we'll carve them once we return from Memphis this weekend. Fun times!

Still here!!!

I've been very busy this past weekend with my vendor table setup. It seemed to be very successful and several people requested more information in the mail. I had a few moms who said they plan to contact me really soon to book a session. Also, two different moms expecting twins! HOW FUN?? Also, a mom told me about a beauty pageant coming to the area in November and that they are looking for a photographer for that event. She's going to email me all of the information I need and if it sounds right, I'll be shooting at a beauty pageant in November. I'm very excited!

Now I need to focus on cleaning this house and getting back into the swing of things around here. I took J to Mother Goose story time this morning at 10:30. He did so good. The lady sang nursery rhymes and J danced and clapped along with the other kids. After the nursery rhymes, she handed out stuffed animals to all of the kids and read Old MacDonald. My baby boy was naming animals and making the sounds. Next she handed out the magnets from Old MacDonald and all of the kids went to put the magnets on the board. Except for my J! He immediately saw all of the little pieces and started to clean them up! He grabbed them all and was putting them back into the basket. OCD?? HAHAHA!! All of the kids got along well and J had a ball. He was very tired after storytime and was ready to fall asleep in his lunch. He didn't put up a fight for naptime at all. HOORAY FOR ME!! Tomorrow we are going to check out a new playgroup. I love seeing J play nicely with other kids :)

Mmmmmmmmm!!!

Saturday night, J and I made Rice Krispie treats! A childhood tradition! He loves to help in the kitchen, so he was so excited! I gave him his own littel bowl and spoon and let him "mix up" some rice krispies, while I did the work with the stove. Daddy was the photographer at this grand event. However, I shoot with only one focal point and he was not aware which one it was so every single picture is out of focus. But I still think he did a pretty good job and the settings on the camera helped him a good bit ;)

"YAY!!!"



Mixing his rice krispies


Taste tester!


Waiting to help Mommy flatten the treats


Sticky flattening!! He was such a great helper :)


First Taste


Mmmmmmm, more please!!!


He wanted to flatten them all night :)


We weren't sure if his tummy could tolerate the treats, so we gave him a small piece and he didn't have any type of reaction! YAY for rice krispie treats!! I think this was a great way for us to mark the end of summer and say hello to Fall. Now if only this weather would cooperate! I hope it isn't this hot at the end of the week b/c I'll be sitting outside for hours at my vendor table this weekend...

Celtic Fest

Daddy forgot to purchase tickets for the circus this weekend, so instead, we took advantage of the BEAUTIFUL weather today and got passes to the Celtic Fest. We had lots of fun. J jumped (read: held onto the net for dear life!!) in the space jump with the other kids, ate a corn dog, watched a sword fight, danced to a childrens band, and rode on a very rough train ride! He even got a chance to sit in the biggest rocking chair in MS! Fun stuff!