2009 was a great year...

Despite all of the issues thrown our way. These pictures prove that through it all, Jayden is still a happy little boy and a blessing in our lives!



















So here's to 2010...may it be a year filled with health and growth for our family! Have a Blessed New Year!

13 days...

I may as well use my blog as a journal as well for the seizures. 13 days after adding an additional medication for the seizures, he had another one tonight. It was very short and he just seemed to hallucinate for a while, freaking out saying he saw a monster, and then he got VERY dizzy and wobbled and fell all over the floor. My husband picked him up and his eyes couldn't focus, they just kept rolling. Now he's exhausted and cannot sit up b/c the room must still be spinning to him. I'm calling the Dr tomorrow morning to report the seizure. A part of me is PRAYING that they do not increase the dosage on the Keppra b/c that medication has caused his behavior to spiral OUT OF CONTROL, but then another part of me just wants them to do whatever they can to stop these seizures.

Betty Crocker ROCKS!!

Yesterday evening, we made a stop at Walmart for some last minute stocking stuffers. While there, I stopped in the baking aisle to get a box of cake mix to make a recipe that my friend, Lyndsay, posted on her FB page. Fudge Crinkles...yummy! I decided I'd make these cookies for Santa (wink, wink). So as I am scanning the shelves for the correct cake mix, I see something that made me gasp!! Betty Crocker GLUTEN FREE brownie mix!!! Yes I get very excited when I find something that my baby loves that is now GF, and I especially get excited when it's an regular brand and not a GF specific brand. The GF specific brands usually cost $5+ a box. Betty Crocker's Brownie mix was $3.50 at Walmart (still a bit more than the regular mix, but certainly not as bad as GF specific brands). There was also the cake mix. I didn't see the cookie mix at Walmart, so grabbed the brownie mix and threw it in the basket. My husband wanted me to throw a few in the basket, but I want to be sure it's any good first. Not that I don't have faith in Betty, but most pre packaged GF baking mixes are VERY grainy. So grainy that Jayden won't bother eating them. It's almost like eating warm sand. Brownies shouldn't be bad though b/c cocoa powder is safe and it helps to keep the mixture moist. We will see. When I bake Santa's cookies (wink, wink) we'll also have him some GF brownies just in case he wants to try those. I'll let you know what Santa thinks (wink, wink)!! Also, I don't think I mentioned it here, but I baked a GF angel's food cake from scratch for Jayden's birthday party and it was DELICIOUS! Fluffy and moist and not so grainy. All of the kids loved it. I'll share that recipe soon, but for now, I need to get back to my elf duties...assembling toys for my spoiled little boy!!

Another one...

Jayden had another seizure today. It was very short, but he was still just as lethargic and non responsive as he was when he had the seizure on Thanksgiving day. The ER doctors told us that it's okay for him to sleep after the seizures b/c they wear him out, so we let him go to sleep and I am eyeing him like a hawk. Surprisingly, I didn't freak out when he had the seizure like I thought I would have. I just felt sorry for him b/c he was so uncomfortable and scared. I am worried, though, b/c I want to know why he keeps having them. I want to know what's wrong with him. I want the Dr to fix it. I left a message for the nurse and I'm waiting for a call back. Please pray for my baby.

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Update: The Dr just called us back. Jayden's MRI is normal (THANK YOU LORD!!), now I can stop inspecting his head for lumps and knots that don't belong there! However, his EEG is still abnormal, but that is no surprise b/c we are seeing the seizures happen. So he may be epileptic. The Dr is starting him on the pediatric dose of Keppra, in addition to his Trileptal. The Dr warned us that Keppra is known to cause behavior problems in small children. This could be a problem b/c Jayden is currently in behavior therapy. But the seizures have to get undder control, so we will do what we need to do. Hopefully once the seizures are controlled, his behavior will get better. I have noticed a difference since he started the Trileptal, so hopefully the Keppra won't make much of a difference. He has to go back in to see the Dr in Jan, so I will keep you posted. Please keep praying for us!

A surprise congratulations!

I'd been planning a surprise party for my husband, since July, to celebrate his retirement from the Air Force. I started the planning so early b/c I know that all of his friends and family live hours away. His parents and his sister and brother live about 7 hours away, but his cousins and grandma (whom he hadn't seen in over 20 yrs) live in New Jersey, so they are a plane trip away and I wanted to give them time to plan ahead. I found out from my sister in law that they got a plane ticket for Mike's grandma and that she would be coming to the party. I was SO excited!!! Mike had his official retirement ceremony in November. He basically begged his parents to come and I felt so sad for him. I wanted to just tell him "Look. I have a party planned for you in December and they are coming down then." But I didn't, and I'm so glad I didn't! My parents did drive down to surprise him at the ceremony though. I continued to keep his party a secret from him. As the party drew near, I was just so excited! Then Saturday came...

RAIN, RAIN, RAIN....all day long. Early that morning I get a call from my mother in law. They are not coming. I was so disappointed. That was the main thing I was looking forward to for Mike. I couldn't shake that disappointment. Then things just started falling apart. The rain wouldn't stop. My mom had to attend a funeral and was running late to get back to the house to help set up. My dad wasn't feeling well. I was doing everything by myself and was so overwhelmed. The rain continued and just got worse and worse. Then, city wide flooding. Basically the flood of 09. Of all days!!!!! I called the DJ and asked her to come an hour later. Then the text messages started coming in. People couldn't make it due to the weather. I just kept saying the serenenity prayer over and over again b/c this was out of my hands. All of my planning and hard work seemed to be washed away in this stupid flood. But the party was going to go on. We were in a hotel in Algiers, so we drove back to the hotel to get dressed and there was horrible street flooding. By 8:30, the rain had stopped and when we left the hotel room the water was receding. Thank God. I sent a text to a few people saying that the party was still on and that we would just start late. Then on the ride to the party, I notice that my camera bag is empty!!!! No camera. Oh my God the devil was so busy :( Then Jayden is in the backseat saying "Wayne where are you?!?!" He gets frantic over that b/c Wayne is no where to be found. We left it in the hotel room...Turning around was not an option b/c of the street flooding and we couldn't be sure what roads were blocked or not. BIG SIGH and I was fighting back tears. My cousin called at that point, to say she wasn't coming. I just said "okay, it's fine b/c I don't think anyone is going o make it. But what can I do??" My cousin heard the defeat in my voice and she got dressed and came to the party. She told me that by the time she got dressed and on the road the water went down.

We got to the house and my mom had the house decorated so nicely! She screamed out SURPRISE about 4 or 5 times but Mike never caught on. My mom had to actually say "Mike, surprise, this is YOUR party!!" and we showed him his cake. Then he caught on! It was so funny. I was disappointed at first b/c I had high expectations for this party. I'm still disappointed in some of my family who never seem to come out to anything, but in the end I know that everyone who knew how important this was for us was there and celebrated with us. By the time the party the got started the rain was gone and so was the water. A few more people came by and said all of the roads were clear, but fog was setting in really thick. We ended up having a really nice time with those that did show up. It turned into a very fun night despite all of the set backs. I'm so proud of my husband!

Pictures were taken, but I didn't have my camera so I have to wait until I get the pictures from my sister and my brother. I'll share them when I get them :)

10 on Tuesday

1. I got the results back from my MRI last week which showed severe sinus inflammation that the Dr believes could be chronic since all of my migraines seem to start off as sinus headaches. He is referring me to an ENT to discuss sinus surgery. Until then, I am taking Levaquin and Nasacort.
2. This morning I went from no headache to full blown migrain in less than 5 minutes. Since it was time for me to take my Levaquin and Nasacort, I just added 2 excedrin migraine pills to the mix and prepared myself to spend the rest of the day in bed for a migraine I couldn't get rid of. Well, guess what?!?! NO MIGRAINE!!! That's a record people. I've never had a non prescription medication take a migraine away, although my mom is thinking that the Nasacort helped :)
3. My boy is talking people! I mean really talking. And I'm loving it! He asks himself questions and answers them, he makes his toy soldiers talk to each other, and he's putting so many 3 word phrases together. To all those people who told me that I would be wishing he wouldn't learn to talk b/c he would never be quiet...YOU WERE WRONG!! I love to hear him use that sweet voice.
4. I am feeling like I need at least a month vacation from my photography business. I just feel burnt out. I imagine lots of potographers feel this way aroun this busy time of year. But honestly, I just may take that vacation!
5. Did you know I opened an etsy store?? I sure did! Check it out www.beanies4babies.etsy.com I have a serious addiction to knitted baby hats so I'm so glad I can use my creativity to create whatever it is I want :)
6. I found out that we have 4, yes FOUR, doctors who live in our cul de sac! And get this, one of them is a neurologist. It's comforting to know in case of an emergency.
7. Jayden has been doing well, but he's still having headaches. We are hoping to get results from his MRI and EEG this week. Praying for good news!!
8. I'm getting bored with my monthly menu lately. It always seems to be the same thing over and over again. Can anyone share their favorite recipes or favorite sites for recipes?
9. I finally retired my blackberry and will be switching to an iphone. I think it will be delivered today and I'm very excited about all of the apps I can get. I'm hoping I can find a good gluten free app b/c I'm always so nervous about where to find food for Jayden when we travel.
10. BIG, FUN, EXCITING weekend coming up for us!!!!!

To my 3 year old

So, this letter is 2 days late, but mommy was VERY busy preparing to make your birthday party special and enjoyable for you! You had a great time and you LOVED your cake. Mommy was so happy you had a great time.


3 years have gone by, already. WOW. Those 3 years have been like a roller coaster ride, going 90 miles an hour. A whirlwind of ups and downs. You've made so much progress this year, despite the many setbacks and obstacles you've come across. You are talking so much more now. You have even started to request things by saying "I want ...." I'm pretty sure whoever I was on the phone with when you came up to me and said "I want milk", may have thought I was nuts when I started celebrating and cheering over your new accomplishment. You are also surprising me with hos well you're doing with potty training. Even when I am lazy and put a diaper on you, you walk up to me and say "Pee Pee" so that I can remove your DRY diaper and let you pee pee on your potty. You LOVE candy and you are very motivated by it. You have moments where you ignore what we say, but the moment you hear that "C word" you quickly respond! This year, you are into super heroes. You love Spiderman, but Buzz Lightyear is your favorite. You are now in a big boy room, complete with a big twin sized bed that you love. You even ask to take naps now. I guess your toddler bed really was getting confining. You loved going to school and would even point it out if we headed out that direction. Mommy is sorry that we had to take you out, but the teachers there were not able to give you your medication in the event of a seizure, so we had to for your safety. We are working on getting you in another school soon. I am so proud of you. Jayden, you have taught me so much in your 3 years here in my life. There are so many things that I thought I'd never be able to do or deal with, but you've shown me that I can do it all and more. I never thought I was strong enough to take on all of your medical needs. To be able to dispense such critical medications to my loved one. To be able to act quickly and calmly in case of an emergency. But I've done it all and it just feels like second nature to me. Like I was put in your life to do just that and that you were put into my life to show me that I can do it. I thank you for showing mommy just how strong she can be.



Jayden, I love the little man that you are growing up to be. I am so thankful that God blessed me with a lovable, active, smart, polite, observant, and happy boy like you. Mommy loves you!!!







Newborn



1 year old

2 years old

3 years old

Stay Strong

I'm pretty sure that I'm so emotional lately due the fact that I haven't been able to get a good night's sleep since Thursday's incident. I check his monitor constantly. I go into his room and make sure he's breathing. If he doesn't get up at his usual time in the mornings, I run to his room to check on him. It's so hard to be worried about your child 24/7, and Sunday we believe he had a petit mal seizure after dinner b/c he was very clingy, whiny, and tired for about 45 minutes. I was afraid to even put him to bed.

We are driving out to Slidell tonight and Jayden's MRI and EEG are scheduled for tomorrow morning and then he will see the Dr right after his procedures, to discuss the seizure(s) he had last week. I am so worried that we will get bad news from the tests. I keep reminding myself that God is in control and Jayden's life was planned out before he even came home to us. I just fear that I simply cannot handle anymore bad news. But God knows better. We got the call in September of 2006, about a baby boy due in November. The birthmom was completely healthy, no signs of drug or alcohol abuse. The only problem she had was gestational diabetes. Jayden was born a healthy baby boy. Now had we gotten that same call, about the same baby, only with the knowledge that the baby boy had autism, celiac disease, and a seizure disorder and that he would require a special diet, therapy 3 days a week, medical care, daily medications, etc, I admit that we would have probably said no to the caseworker. That we couldn't handle a special needs child as our first. But God knew better. Jayden had health problems since the day he came home and although I had Drs tell me that nothing was wrong, I kept fighting until we found out what was wrong. I never knew I had the strength, but God knew. He trusted my husband and I to take care of one of His special angels. It gets so hard and there are times (like now) when I feel weak and ready to give up, but then I look at my precious son, my angel from heaven, and I remember that he needs me to stay strong for him. So I'm going to stay strong!

A Thanksgiving to remember...

How was YOUR Thanksgiving? Let me tell you all about ours!

Our day started off really slow. We actually hung around the house in PJs for the first half of the day. We toyed around with the idea of going to get our tree (out of sheer boredom!), but decided that we'd rather stick to our tradition of picking out our tree on the day after Thanksgiving. Jayden went down for a nap, my husband ran to 7 (or was it 13?!) gas stations to find me a Thanksgiving newspaper, and I knitted. Bored. I thought about gumbo and wished I had some. Instead, I made me a turkey sandwich and announced that at least I enjoyed some turkey on Turkey day. Jayden woke up from his nap in a great mood and my husband said "I wonder if Bass Pro Shop is open today?" Actually, they were and Santa was there! So we got dressed and headed over to Bass Pro. Jayden remembered the building from last year and as soon as we pulled up he yelled, "HO HO HO!!" He knew he was going to see Santa. We got inside and Jayden was saying, "Santa, where are you??" We got to the back and Jayden ran straight to Santa's lap. He took some pictures and then went to write a letter to Santa and we snapped some pictures of him mailing his letter. I should really get back to sharing pictures on this blog. Really, I should! After he mailed his letter, he ran back to Santa again. He just couldn't get enough of the big guy (and the candy canes!). Next he played on some boats and sat on some quads. Then we decided to go out for our non traditional Thanksgiving dinner at LoneStar Steakhouse. This is where someone decided that our day was simply too boring and we needed some excitement...

Lonestar was dead! What? No one eats steak for Thanksgiving?? LOL! It was fine for us though b/c we knew Jayden would do better in a less crowded environment. We got our seat and Jayden unrolled his silverware and started playing with the utensils, as usual. He was also climbing under the table going to sit with my husband and then coming back to sit with me. Nothing unusual for him. We colored on his coloring page, I traced his hand, and I gave him his drink. He was totally fine. Then my cell phone rang. It was my sister in law calling to check in on us since we weren't able to make it to the family dinner in New Orleans. I could hear all of the chaos in the background and I said, "Oh yeah, it sounds hectic over there!" As we were talking, Jayden was still playing under the table (at least I thought he was) and then he started screaming. But Jayden is a screamer, so I didn't even think anything was wrong. I told my siter in law, "Girl, let me tame my child, I'll call you back!" I hung up the phone and Jayden was closer to my seat so I was trying to pull him up and my husband was trying as well. Jayden was facing me and screaming, but I wasn't really looking into his face b/c, again, I didn't think anything was wrong, just that he was being naughty. I noticed that he was extremely hard to pull up, as if he was stuck. Then he started screaming and crying "Mommeeee, mommeee, mommeeeee!!!" I heard fear in his voice and it was a sad cry, not his angry cry. I looked down in his face and it was like he was begging for help. His fists were clenched and I had to PRY the fork out of his hand. I kept trying to pull him up and reached down to see if his leg was stuck or something b/c something was hurting him. Then I noticed his legs were crossed and he wouldn't uncross them. It still didn't cross my mind that he could be having a seizure though. I could NOT get him from under the table, so my husband was able to grab Jayden's shirt and pull him from under. Jayden got into the booth by my husband and his expression was just distant. He stared up at the ceiling trembling, clenching the table and whining saying "Scared scared" and at one point he said "Spiderman", but the look on his face was like he had checked out. I looked at my husband and I said "Now I think that was a seizure." Only, we didn't know what to expect next. He leaned against my husband and wanted to be held close. He screamed if he wasn't snuggled up against his daddy. Mike took him outside and I was calling my mom to see if a trip to the ER was necessary. My mom didn't answer. The waiter deliever our food just as Mike came back and gave Jayden to me. He was still whining and the only word him would say is "scared" and his voice was getting weaker and weaker. Then he got very cold and clammy and just went kind of limp. Mike ran to get our waiter, got our check, and left...no dinner for us! As we got outside, Jayden wasn't responding to me anymore, just a very weak cry. I contemplated calling an ambulance at that moment, but I knew I wouldn't be able to wait around for one so we jumped in the truck and I sat in the backseat and held Jayden while Mike drove to the ER. He had on his hazard lights, but the traffic wasn't bad at all and we got to the ER pretty quick. I went to checxk him in and the girl at check in was basically ignoring me at the window so I said "My son is having seizures and is non responsive. Then she noticed the limp, moaning child in my arms and got us checked in and called back immediately. In triage, they made me stand him up and he was just moaning, not responding to anything, not even candy or spiderman stickers. And when I stood him up he fell. My baby couldn't even walk :( I was SO scared. All of his vitals were stable though. We went to a room and 3 ER doctors checked him out. We were telling them that we "think" he had a seizure, but we just weren't sure. The Drs all agreed that Jayden was showing the classic symptoms of a generalized seizure that affected his entire brain, which is why he couldn't walk or talk and why he was probably hallucinating when he said spiderman when we were in the restaurant. The main concern was how long the seizure lasted. We believe it lasted for 30-45 seconds, but we are certain it didn't last for 5 minutes, which is when they say it gets dangerous for him. So now the hard part was him recovering from it and his brain activity returning to normal. After about an hour in the ER, he was talking again. He even asked the Dr for some juice. He still couldn't walk though and that was very scary. We had to stay until he was pretty stable on his feet. Once he was able to walk without falling backwards, they let us go. They gave us a prescription for a medication called Diastat, which is basically a seizure medication given rectally to stop a seizure that has gone on for 5 minutes or more. We have to carry it with us where ever we go. The ER dr also told us that it is VERY important for him to have a followup with his neurologist since this is basically the first time he's had a seizure like this (that we know of) since being on his antiseizure medication. His neurologist needs to know this b/c he may have to change Jayden's medication or the dosage, and he needs to get the results from Jayden's MRI back stat b/c his condition has changed since starting his antiseizure meds. So the clinic is closed today, but I will be calling on Monday morning. His MRI is scheduled for Wednesday, so I'm hoping that the Dr can squeeze us in on wednesday after the MRI and hopefully have some answers for us.

Jayden bounced back by 10 o clock last night. He did throw up twice, which is what I was waiting for b/c whenever I've witnessed someone have a seizure, they usually threw up afterwards. After he threw up, he was jumping in bed, requesting movies, and being bossy! LOL. Jayden was back. This morning he was OFF.THE.CHAIN. But let me tell you how thankful I was to have my hyperactive, mischievous, son back. Last night, when he was limp, quiet, non responsive, and not able to walk, I just imagined what life would be like if my baby didn't gain his skills back. Things like this happen to parents so often when children have brain injuries, and I just had that fear. I thank God that we didn't have to endure such heartache and I pray for the parents that are going through that hell.

Laid back

We decided that this year we will not be driving to New Orleans to spend Thanksgiving with family this year. This is the VERY first year that I will not be seeing my parents and the rest of my family on a day when the people I'm most thankful for is them. It's tough, but it really wasn't a hard decision for me to make. The decision was based off two main factors: money and Jayden. It costs us $80 round trip to make the drive (which actually isn't that bad), but we'd have to make the drive all over again next week for Jayden's MRI and EEG at Tulane. Considering it's almost Christmas and Jayden's birthday and his party is right around the corner, it's just not in the budget to travel to New Orleans twice in one week. Also, my family is HUGE! HUGE! HUGE! Seriously huge. And we like to all have Thanksgiving dinner together. So imagine a family of 50+ people (and I'm not counting my great great uncles and 4th cousin removed. These are aunts, uncles and 1st cousins and their kids) all seating at tables that are lined up like cafeteria tables very close together. All talking at the same time. Laughing. Utensils hitting fine china. Babies crying. Kids screaming. All sensory overload for Jayden. Last year was horrible for him and we were just beginning to notice that something just wasn't "right" with Jayden. So now we know what isn't right, so it wouldn't be fair for us to purposely put him in that situation. Also, there are a few in my family who just do not agree with his diagnosis. One of them is my really close cousin, but she is VERY opinionated. And maybe I am just uber sensitive (okay I admit, I am VERY sensitive) but it hurts to hear people tell me that I'm babying him and I need to let him grow up. Or that he's a sissy (yeah my uncle told me that at the reunion in August). Or to have other people feeling like they need to step in to help me discipline and they yell at my child, making him go into a fit of rage for me to attempt to calm down. To them, he is just a bad child. And that hurts. So I'm not putting my child, nor myself, through that this year. We will be spending a quiet Thanksgiving dinner here at home. I haven't decided yet where we will go for dinner b/c I'm not a big Turkey and stuffing eater but my hubby is. Cracker Barrel will probably be the equivalent of having dinner with my HUGE family, so that's out! What I do know is that I will enjoy my day with my little family of 3 and thank God for blessing us all with each other and with our health. Have a happy holiday everyone!

Quick Update

I've been meaning to update for a while now, but we have been very sick in this house! Jayden is getting over his very first double ear infection and I am getting over a terrible sinus infection and bronchitis that never completely went away from last month. The fact that I am able to open my eyes and actually sit up and type this updates means that I am feeling SO MUCH better. My house is very happy about that. Let's just say that if Mike was a bachelor, he would not keep a clean house!

Anyway, Jayden was accepted into the school system for additional therapy once he ages out of EI next week. The main reason for his acceptance: Autism. He had several small tests done on him during the eval including speech, cognitive, gross/fine motor, and social emotional, along with a GARS-2 eval, which is a screening done to show if a child shows signs of being autistic. Scores or 85 or higher means that the child is "very likely to have autism". Jayden scored 96. I wasn't surprised but my husband is still grasping at straws and hearing the behavioral therapist say, time and time again, that he is just not autistic, gave him the straws to grasp at. He's also been told that as Jayden gets older, the behaviors will disappear. That's not always true in a child who is diagnosed at such an early age. Truthfully, as we see some behaviors fade away (the headbanging), we will see new behaviors show up (lack of eye contact). The silver lining of it all is that, while Jayden does exhibit extreme autistic behaviors, he doesn't seem to suffer from any of the learning disabilities associated with autism. This is a positive and a negative thing for Jayden though. Because he is so bright and social (he is VERY social as long as he can control the surroundings) people will just tend to call him a "bad, spoiled child" when something sets him off and his behaviors spark. That's difficult for me b/c I know that there is a reason why Jayden does the things he does, and in my mind, I feel like once you accept that he is who he is for a reason, then it will be easier to deal with those behaviors. If people continue to view him as the bad child, he will continue to be pushed into situations that he just cannot handle and he will not be able to progress. So, if me helping my child to cope with what I know is a stressful situation to him is considered me spoiling him or babying him, then so be it. I know that he finds comfort in it and that's my job as a mother, to comfort him.

He has one more appt with his behavior therapist prior to exiting EI. She told me that he wouldn't get accepted into the system b/c his speech isn't delayed and b/c he has no social issues and b/c he is CLEARLY not autistic. Well, he tested at a 24 month level in speech and social, a year behind where he should be. I guess someone needs to stick to what she knows and it's obviously not child development.

Seizures, complaints, evals, and comments

I haven't had time to update, so this post will contain some of it all!

First off, Jayden was evaluated for both the Rankin County (MS) school system and St. Tammany Parish (La) school system. Rankin County took place last Friday morning. Jayden actually only showed a delay in speech, and tested normal in all other areas. We were not surprised b/c we know we have a very smart, independent, observant little boy. However, in Rankin County, he has to be delayed in at least 2 areas in order to continue therapy through the school system. Jayden would be eligible for services in the school system due to his diagnosis, but the evaluation was to help us know what he would need assistance with. So I think the counselor was a bit concerned to see him only show a delay in speech. As we were discussing that, Jayden was with the SLP and she attempted to transition him from one activity to another and I believe he was just overstimulated by everything going on and he exploded. He started with his high pitched scream and ran through the room flipping over every single chair. I stopped him from flipping one chair over and he punched me then ran over to the LONG table the was filled with items and he swiped every single item off of that table and then punched the counselor who was trying to calm him and ran to the door and started beating and kicking it. All of this while screaming and it all happened in about a minute. He continued to scream and kick on the door b/c he was ready to go and he wouldn't calm down. Finally, we moved him to a room right next door with a little bike, for a change of scenery and he calmed down immediately. Now, the counselor looked at her eval form and was circling answers to about 12 questions without even asking us. She told me that she had her answers just by watching what had just happened and that he definitely will need behavior therapy. Funny, how just the week before his BEHAVIOR therapist told me that he didn't need the therapy. She just has yet to see what happens everyday. So we are waiting to hear back from Rankin County and to meet with the team of people who would be working with Jayden should he start school out here. But, honestly, I am going to avoid that at all costs simply b/c I do not want to go through, with the school system, what we are going through with EI.

Tuesday morning, he had his eval with St Tammany Parish. He walked in there on edge, so they got to see everything from the minute we walked in. He was first seen by a child psychiatrist. She asked what our concerns were and I told her mainly his behaviors. She asked what type of behaviors and he showed her. He screamed at her each time she told him to do something. She asked him to stack some blocks and he screamed at her and swiped the blocks off the table. He continued to knock them off each time she picked them up and then he threw them at her and tried to hide behind Mike's chair. She made Mike push the back of his chair against the wall so Jayden couldn't hide and Jayden tirned and faced the wall instead. She finally got him to come close to her by building a train with the blocks. He sat down next to her and played with the "train" but moved away from her anytime she even lightly touched her. From there she was able to see that he would benefit from behavior therapy and occupational therapy in the school system. Next he had his gross motor skills tested and of course he passed that with FLYING colors. They did a speech screening and did confirm that he's average with his receptive speech but delayed with expressive. Also, they needed detailed info on his health conditions. In the end, they told us that he would more than likely have behavior therapy, OT, ST, and even a nurse due to his celiac disease and seizures. He will have a complete evaluation by each individual therapist prior to entering the school system to determine his delay and the goals he needs to meet. I have to say that I was very pleased with that appt and I feel comfortable with them b/c they seemed to pick up on EVERYTHING without me saying anything.

Wednesday, we had his first behavior therapy session since I filed my complaint. Jayden's caseworker came to sit through the session to observe. The therapist arrived and immediately started trying to engage Jayden. He wasn't in the mood b/c he hadn't had a nap. She tried getting him to sit down and do flash cards, but he wouldn't and he kept flipping the chair over instead. Usually, she would just let him flip the chair and then go about his business until she could con him back to the chair with candy. This time, since I mentioned in the complaint that she doesn't work on his behaviors at all, she followed him when he ran off and carried him back to the chair and made him pick it up. Jayden was so upset b/c he is so used to her just being the "fun, candy lady". He actually even calls her "Candy". So to have her to all of a sudden change gears was probably frightening to him. She should have been addressing the behaviors all along though. So anyway, he continued to be naugthy (although it was NOTHING compared to what he could do. This was just exhaustion and frustration) and she continued t bring him back and correct him when he did something wrong, but I could tell it was VERY awkward for her. She eventually just sat back and sighed and said "It's honestly best to just ignore this as much as possible." To which my husband replied, "How do you ignore this (kicking, screaming, breaking things) in public?" She said, "Honestly, I have no idea what to tell you about that." There. She said it. She admitted that she doesn't know how to deal with behavior problems. She does so well with learning disabilities, but my son doesn't have a learning disability. He has a behavior problem. So she can't help him. I can accept that. What I won't accept is her telling me (and his other therapists) that he doesn't need the therapy. Her advice for home was, "Can you put him in his room and close the door until he calms down. Maybe he needs the escape." I told her, I can put him in his room but only if I want him to pull down the drapes, break his furniture, possibly the window, and hurt himself. Sure I could put him in the room, but I love my child and I don't want him hurt over his behavior that he obviously cannot control. The caseworker then chimed in and said "What you saw today is MINOR." and she went on to tell the therapist how he behaved at the school eval. Then, of course Miss I don't agree with Jayden's diagnosis asks, "Did he qualify for help in the school system? The caseworker told her that he did qualify for speech and behavior. So then she asks, "Well did you get his scores back b/c I would be interested in seeing how delayed he is in speech, if he is at all." You know what? When I do get his scores back, she can believe that she won't be seeing them b/c I doubt if she will still be coming to my house b/c I've had it with her attitude. If you don't agree with my son's diagnosis, fine. But don't constantly come to my house and go against everything that we're being told. It has taken us long enough to have closure with this and move on to getting him the help and care he needs, so I don't need her coming here telling me that there is NOTHING wrong and that it's "just us".

Wednesday, Jayden also had his Neuro appt. Basically, the Dr confirmed that Jayden's EEG was indeed abnormal and that he needed to be started on antiseizure medication. I told him that we've seen Jayden stare off into space, tense up and look spaced out during a tantrum, and also just look spaced out for a few seconds, but never have we seen him behave in a way that we can certainly say he's had a seizure. The Dr said that he could be having seizures all day long that we just are not seeing, but there's also a chance that he's not having seizures at all and the abnormal brain waves could be from something else. So he ordered an MRI and another EEG so that he can read the results himself. He told us that at this point, since the EEG is abnormal we need to treat the EEG. But he wants to find out WHY the EEG is abnormal so that he can treat Jayden, specifically. For now, he is on an antiseizure medication called Trileptal. We have to slowly get him to his proper dosage of 5ml in steps. He takes 1ml twice a day for 3 days, 2ml twice a day for 3 days, and so on until we reach 5ml. I do believe we will have to wean him off of the meds again for his EEG. I'm calling the nurse about that on Monday. Today is day 3 on the meds, and I honestly see a difference in Jayden already. Last night, he stayed with a sitter while we went to dinner for my husband's retirement. After dinner, we called to check on Jayden and the sitter said that he had fallen asleep. This is unheard of for Jayden, to fall asleep when he isn't at home in his bed. He actually crashed on their couch. When we picked him up, he was so pleasant and he had no problem going back to sleep once we got home. And today I let him skip a nap since his Nana and Papa were in town. He was so well beahaved. We even had lunch before my parents left and not a problem out of Jayden. Then we went to Toys R Us to do some birthday and Christmas shopping. TRU was a madhouse, but Jayden handle it so well. Not one problem out of him. And now we are home and he is being so calm and well behaved. I do think that it has something to do with the meds. We will see! Especially when I wean him off b/c if the meds are helping to calm him, he will get very irritable when we wean him off.

So that's an update. I also wanted to mention something that offended me Wednesday evening. Ever since we started to notice that something just wasn't right with Jayden, we've been getting comments from family and friends (even strangers) about how he's "just being a boy", it's a phase, he just needs a spanking, he's spoiled, etc. But of course, you all know that I always went with my mommy gut. I'd be lying, though, if I told you that these comments do not make me feel like a paranoid, over protective, first time mom. Also, I admit to being a control freak, so sometimes these comments make me question myself and if I am just wanting my son to be perfect. On Wednesday evening (yeah we had alot going on that day!), we went to a Veteran's day gathering with some of my husband's military buddies. I was sitting at a table with some of the wives and Jayden was in my lap. He still had his bandage on his arm from his blood draw that morning and one of the wive's asked me what happened. I told her about his appt and she asked me about his seizures. I told her I hadn't actually seen what one would expect to see during a seizure, but he does starte off alot and get glassy eyed at times. She said "Please, I stare off! That's normal." I didn't respond. Why do I need to respond? He has an ABnormal EEG, proving that something is not right. She goes on to say how he's just all boy and everything he's doing is normal. I'm so glad that I never let these comments about what's normal and what's not stop me from fighting for my son. Had I listened to those comments, that him not eating or screaming at the dinner table was normal, I would still be stuffing gluten in my baby's belly and tearing apart his intestines. Had I listened to the comments that his out of control behaviors were simply b/c he is a boy/spoiled/needs a spanking, we wouldn't have had an EEG done and wouldn't be looking further into why that EEG was abnormal. I know that these people are only trying to be supportive, but I'm so thankful that God blessed me with the Mommy instinct to know when something is just not right. Thank you God.

Complaint #637...

Seriously though, I don't think I should have to file a single complaint with Early Intervention. They should just do the job they are supposed to be doing and mainly, I think they need to be careful when choosing their contracted providers. This complaint just HAD to be filed though because it was going a bit too far...

To refresh your memory, check out this entry. From there you will see that the behavior analyst disagreed with the Developmental Pediatricians diagnosis from the very beginning and she just can't seem to put her opinion aside and provide the care that she is supposed to be providing for Jayden. Instead, she seems more focused on proving why she disagrees with the diagnosis. Last week she took it too far though. At the beginning of October, we asked her to switch his services from the clinic, to our home environment because we were still struggling with the behaviors but she had yet to see any in the clinical setting (play room FILLED with new toys). She agreed. She came the following week and only stayed for 15 minutes of what was supposed to be a 45 minute session. The following week, she cancelled 15 minutes before the session was to start, saying that she wouldn't be able to get out of her office on time. So really, no real excuse to cancel the session. She came last week and stayed the duration of the 45 minute session, but spent most of it telling me that he didn't need ABA therapy "because I work with kids on the spectrum and we never get as far as I've gotten with Jayden." To that I replied, "We have not addressed his behaviors and that's my concern." Then the finger pointing started. She said that maybe his speech therapist is boring. That his OT should be doing more behavior stuff with him. And this is the one that pissed me off...She asked if he gets into trouble at MMO. We told her no (but found out Monday that he has been getting into trouble) and she said, and I quote, "Well, it must be something about you two." I swear my face turned red. I wanted to tell her off right there, but I held back. I did say I don't believe it's just us and that the behaviors need to be addressed. Jayden ran to the potty at that moment and couldn't get his underwear down on time so I had to go help clean him up and she used that as her que to leave. I had no closure and she didn't tell me what her plan for the next session would be since she felt he didn't need the therapy. I just knew that she wouldn't come this week. So yesterday, 3:13pm, my phone rings. It was the clinic and I was tempted to pick up the phone and say "Are you cancelling again?" but I didn't. It was the receptionist from the clinic saying that the therapist called the clinic and told them to let me know that she wouldn't be doing home visits today. No reason why, just that she wouldn't. And when she cancels, she never makes up the missed session, so it's just a lost week. To me, it seems like she is not taking Jayden serious b/c she doesn't agree with his diagnosis. I said in my post above, that I would deal with her as long as she provides the service requested. Well, at this point she isn't, so I cannot deal with her or have her wasting my son's time. I filed the report yesterday and got a call this morning from the Dept of Education. The lady basically said that she is the only person in the state that does behavior therapy so they spoke with her and she told them that she is willing to come to my house at the scheduled times along with the speech therapist, so that she can show the speech therapist how to work with him. That's BS. I told the lady that the behavior therapist has not touched his behavior issues. Instead, she points the finger. All the lady could tell me was, she's the only person they have. This is why I have to get out of MS. After the phone call with the Dept of Education, Jayden had speech therapy. He did fine until the therapist showed him a picture of a camera and he is obessessed with my p&s camera so he ran to grab it. We decided to let him take a few pictures with it and he would name everything he took pictures with. Then we needed him to move on b/c he started to get destructive with the camera. I tried to make a switch, the camera for his headphones which he usually LOVES, but he was not ready to transition. He threw the headphones, ran through the living flipping his chair and table over and swiping everything off of the coffee table, all while screaming like a banshee (and I know my neighbors heard this). Then he ran to his room. The BA once told us, when he knocks something down make him pick it up. That doesn't always work and today was an example. I literally had to DRAG him to the mess and tell him to pick it up. He screamed and flailed his body around, knocking down more stuff. So the speech therapist said, let's try hand over hand. So I took his hand in mine and made him "pick" up the mess. He balled his hands in fists and continued to kick and scream and hyperventilate, while I'm pretending that he's really picking up things and making me proud. Let's be honest here. I cannot deal with that 24/7. I need help with those behaviors. I don't know if the BA is skilled in working with that b/c she only focuses on learning and ignores the bad behaviors or distracts the kids with candy. Jayden is unpredictable. I'd literally have to have him eating candy all day to (hopefully) avoid a tantrum b/c once it happens, even candy will not pull him out of it.

Jayden's caseworker called me today to check on us since she'd heard about the complaint. When I told her the the BA said about my husband and I being the problem, the caseworker was just as pissed as I was. The thing is, I have a 10 page long evaluation of Jayden from the Dr, explaining all of the findings and a diagnosis, along with plans of action with one being behavior therapy. In my opinion, there is no reason for the BA to disagree with the diagnosis unless she can show me a 10 page report with opposite findings on my son. Otherwise, she has no case. The speech therapist actually cannot change her schedule, and I'm actually glad about that b/c the BA is trying to call all of the shots here. So I don't know what her plans are for next week, but Jayden has an appt on Wednesday in New Orleans for his seizures and I do not plan to rush n\back to Jackson for his therapy b/c chances are she will call at 3:15 and cancel again...why? Because he simply "doesn't need it".

For Miss Lou...

Or as Jayden calls you, "Woo Ahn"

I want to thank you for being the best therapist, in my (and my husband's) opinion, on Jayden's team. You are so passionate about your job and show your concern and love for the kids you take on. You've done more for Jayden in 6 weeks, than the other therapists have done in 1 year. You never let Jayden's "off days" or unnecessary roughness get in the way of helping him to achieve his goals. If something doesn't seem to work the way we expected it to, you tell me that you will "go home and brainstorm" and you honestly do just that. At the next appt, you come armed with more information and advice. I know that you are sad that Jayden will have to transition out of EI next month and I know that you would love to continue working with him, and we feel the same way! We will miss you terribly, but you've equipped us with TONS of knowledge and items to help Jayden out with his sensory issues. Thank you so much for the countless handouts, developmental charts, the copy of the Sensory Smart Child has Fun, the ear plugs (for Jayden folks!!), and the noise reduction headset (again, for Jayden although I did put them on today during a tantrum!). Finally, I appreciate the way you offered to step up and help with his behavioral issues, even though it's not what you are trained to do. That's called going above and beyond and I thank you for it.

So, Miss Lou Ann, we LOVE YOU and we will miss you when Jayden transitions out of Early Intervention next month, but I thank God for sending you our way for the short time that He did.

Really??

I think my son may be potty trained!! Well, I won't say 100% b/c I still put a diaper on him at night, but doesn't that take a while for all kids to get the hang of, waking up at night to use the potty? Also, since he is so independent about it (doesn't tell us, he just goes on his own...and slams the door in our face if we follow him!), I'm not sure how he will handle things in public. But I guess I can safely say that Jayden is 90% potty trained in only 6 days?!?! He actually woke up this morning and tugged at his diaper and said "Buzz" b/c he wanted to put on his Buzz Lightyear underwear. And just a few minutes ago he was playing in his haunted house we built for him yesterday and then I heard him calling to me from the bathroom, "Mommy!!! YAY!!! MOMMY!! YAY!!!!" And there he was, sitting on his potty and it was filled with pee! My kid is so smart and I'm so proud!!

Day 4

Wow. So far so good! He had school (MMO) this morning so we put a diaper on him. I know the books say not to do this b/c it will confuse them, but he cannot verbalize the fact that he has to go, so we have no other choice until he learns to use the sign consistently or learn to tell us that he has to go. So anyway, he wore the diaper at school and then during a nap. After his nap, we took the diaper off and put on his Buzz Lightyear underwear. He did wet them a little, but we could tell that he felt himself getting wet and he stopped. We took the underwear off and let him run around with just his tee shirt b/c I kind of figured that he was wanting privacy, but didn't quite know how to pull his own underwear down yet. Well about an hour after I took off the underwear, he roamed into the hallway, so he was either going to his room or to the bathroom. I called to him (b/c it's not wise to let a naked, not quite potty trained, toddler run unsupervised through a house that you are trying to sell)and he said "Yes???" and came running back into the living room squealing "YAY!! I DID IT!" We totally thought it was a fluke, but sure enough he peed in his potty, all by himself. I think when I called him, though, I disturbed him b/c he had some on the floor as well and then about 5 minutes after that he went back to finish, without anyone telling him to go. So he just walks into the bathroom and sits on his potty when he has to go :)

But here is the BEST part! I didn't expect to have any luck with the bowel movements due to his celiac disease and the fact that he needs a daily stool softner to help him go. Add to that, the fact that he hadn't had a bowel movement since last week on Wednesday, so I wasn't expecting him to be able to do it in the potty. Well, he kept grabbing at his butt and running to the bathroom (SO FUNNY!!) and we would peek in on him and see him sitting on the potty, but then he'd get up and come back in the living room. This went on for about 45 minutes. Next thing you know, I'm on the phone with my sister and my husband is on the phone with his mom and he (my husband) says "Oh mom, I have to go!" Jayden was in the bathroom handling his "business"!! He had also "attempted" to wipe himself and clean up the little mess he made on his way to the potty, but we were so happy that he did this all by himself!! He got TWO lollipops for that! Now, I do still expect the bowel movements to be a bit tough for him b/c it was obvious by the mess in the bathroom that when he has to go he has to go NOW! And he can't hold it. But he gets the point and that's what matters. I'm so very proud of him and he may be out of diapers by the time he's 3 after all!

Potty Training

So, we know it's time to ditch the diapers. Jayden will be 3 in December and most (I think ALL) of the kids in his social circle are out of diapers by now, and they are all boys so the excuse "boys are harder to train" just won't fly! LOL! We are expecting him to have a hard time with bowel movements due to the fact that he has to have a daily stool softner and even with that, he only goes 3 times a week and he can't seem to control it so we will have to see how that goes, but we won't rush him.

So our intentions were to start him today, 3 days of no pants or a diaper. He actually woke up Thursday morning (I was still in Slidell at my parents and he was home with Daddy) and said "pee pee". My husband thought that he wantd his diaper changed so they went to Jayden's room to change him but Jayden started crying and crossed his leg. So my husband sat Jayden on the toilet and Jayden said "3 2 1..." and peed,and then yelled "YAY!!!" So yesterday after his nap, we went to walmart and let him pick out some briefs (He chose Toy Story) and even though I highly despise potties, we got him one that plays music whenever he pees in it. We want to make it fun for him, so I need to forget about my disgust for those pots and do it for him! Today, he had ZERO accidents and peed on the potty twice. He seems to be holding it until his bladders hurts him though so hopefully he gets used to the idea and this won't become a problem. I do sit him on the potty once every 30 minutes even if he doesn't ask, just to try. He also took a 3.5 hour nap today (in a diaper) and woke up dry! Day 1 was definitely successful!

Awakenings

4am this morning. Well, actually, I heard him tossing and turning in his bed at 2:30am. I was so tired that I just went back to sleep though. At 4am, I heard him banging toys together. SIGH. I went to his room and the toys were all over. He was having a ball. At 4 (FOUR!!!) am :( I told him to go back to bed and he said "Ok" and climbed back in bed. I immediately removed all of the toys. I attempted to go back to sleep, but it's very hard for me to fall asleep especially when my husband is in bed snoring. So I was up, and guess who else was?? Yep, Mr. Insomniac. I watched him on his monitor and the poor thing was trying really hard to fall asleep but he couldn't. He tossed and turned. Tried one end of the bed, then the other. But he never went back to sleep. So, last night he fell asleep at about 10pm and he was up for the day at 2:30am (maybe even earlier). So he only had 4.5 hours or less of sleep. He had MMO this morning and I was going to just keep him home so he could sleep, but the child NEVER went to sleep! When we went to get him out of his room he was bright eyed and ready to go, but he did stay in bed until we went to get him. So he's at MMO now and judging by the way I feel, I can only imagine that Jayden must be tired!!

Now, I have completely cleared his room of toys while he's off at school this morning. I went through his toy drawers (3 plastic drawers on wheels from walmart) and threw out the broken toys and the ones he no longer plays with are going to goodwill. I put the toy drawers in the living room. I took the train table out of his room as well. No more toys in his room. However, I honestly don't think the toys are the reason why he wakes up in the middle of the night and can't go back to sleep. He's had those toys in his room for over a year now and we've never had this problem. Besides, when I took the toys out of the room at 4am, he still couldn't fall back to sleep. It seems as if something is waking him up out of his sleep and then he's just too wired to go back to sleep no matter how hard he tries. So, just like any other person, he gets bored laying in bed with his eyes open so he plays with his toys. I just don't know what's going on with him or what to do. I feel sorry for him. I know a child should not only get 4.5 hours of sleep. Nothing has changed as far as his bedtime routine goes. He still gets his bath and warm rice milk right before bed. We brush him (sensory), read him a story, turn on his sound machine, and say good night. He's been to the Dr for his eye (allergies) and they said his ears were clear, so no ear infection. These sleep issues have been going on for over a month now though so I just don't know. What I do now is that I am TIRED!!!!

Can't help but worry a little...

For the past 2 months or so, Jayden has been having a really hard time falling asleep. We put him in bed every night at 8:30 and he goes without a fight, but it takes him a while to finally fall asleep. Usually at 10:30, 2 hours after getting in bed, we still hear him in his room moving around in bed and humming. Some nights I still hear him close to midnight! I wasn't really worried about it then b/c I figured he's just not too tired by 8:30 anymore and that eventually he'll start to fall asleep sooner. Well, now he can't seem to stay asleep. We've had 3 am awakenings at times and I can go in the room and tell him it's still too early to wake up and he'd eventually go back to sleep. Well, for the past 2 weeks, he's been waking up for the day at 5am. There's no convincing him to go back to sleep at least until the sun comes up! He doesn't cry or even get out of bed when the sun isn't out yet, but he's awake by then and can't seem to fall back to sleep. Now, Jayden has always been a great sleeper. By 3 months old he started sleeping 12 hours at night and that continued up until now, so I could just be spoiled by having a good sleeper. But what concerns me is that he has gone from sleeping 12 hours a night to sleeping 6 or less, which is not okay. During every evaluation Jayden has ever had, we've been asked if he sleeps through the night. We always say "OH YES! Never have a problem with that." But now, I think that's changing. My concern is that something may be happeneing in his sleep, neurologically, causing him to wake up and not be able to fall asleep again. Also, last week at behavior therapy, he stopped in his tracks on the way to the therapy room and clenched his arms and started trembling. It lasted all of 10 seconds and then he was running again. I figured he was just being silly but the therapist was concerned b/c right after he had a limp and his right foot was turned in when he walked. Shit. We always noticed his foot turned in at times and he walked with a limp at times, but it was never ALL THE TIME, so now I can understand her concern. Well, he did this again at the neighbor's little boy's birthday party yesterday. He trembled, this time a bit longer, then started liming but kept on playing. However, he got irritable and no longer wanted to be around the other kids.

I want to believe that I'm just looking to deep into things since I know that he had an abnormal EEG and have to wait until Nov 11 for an explanation for this. Now, of course, we pick a part every weird thing that Jayden does. But this significant change in sleep pattern and the trembling and limping are just causing me to worry a little. I am going to keep a journal now until his appt, to have this info to give to the neuro, but until the 11th, I'm not sure there's much more I can do. So until then I'll remain worried...and EXHAUSTED!!

34 lbs!!!

We had to take Jayden in to the Dr this morning for his eyes, so of course they weighed him. I seriously squealed with delight when she said 34lbs!! I knew he was looking chunky in the thighs!! I'm so happy he's finally gaining weight...and fast!

10 on Tuesday

1. I think a certain little boy is getting sick :( I figured he was when he started to bring back behaviors that we hadn't seen in a while. Sensory issues are known to heighten when the sickies come along. He cried the pitiful cry through lunch, almost fell asleep sitting up, and woke up with swollen, yucky eyes. We'll see how he looks when he wakes up in the morning.
2. We put the house back on the market this week, without a realtor. By dropping the realtor, we were able to drop our asking price by 5k. Now we just have to work on marketing. It's already here, so if you know of someone searching for a nice home, in a nice neighborhood, for a NICE price, send them that link!
3. I've been trying to decide what I want Jayden to be for Halloween, but I think he is determined to be spiderman! My baby is growing up too fast!
4. So it's October, and you know that's when I start brainstorming ideas for Jayden's birthday in December. Of course, there's no question that it will be a spiderman theme, but I think I'm going to do his party at home this time around. Last year his 2nd birthday party was just as huge as the 1st b/c he has SO MANY cousins. Having it here in MS will guarantee less kids! LOL ;)
5. Have I mentioned here just how much I love Jayden's new Occupational Therapist? She is so thorough and you can tell that she cares about the kids she works with and their parents and she is the only one of his 3 therapists who seem determined to have him to meet his goals by December when he will need to transition to the school system. We are hoping that he won't even need OT by January!
6. And while I'm spreading the love, our new case worker rocks as well! She came by this morning to have the OT to sign off on his updated IFSP so she could fax it to the school he's going to be enrolled in. She sat through therapy and watched how his behaviors affect his 45-60 minute therapy sessions. She agreed with me that his behaviors at home and at the behavioral clinic are like night and day. He's an angel at the behavior clinic b/c he gets to play in a room FULL of toys. No need to get frustrated when you are surrounded by new toys, oh and let's not forget the candy! Behavior therapy is when the behaviors need to be present so she can help us work through it. The case worker suggested that we have the therapist come to our house as opposed to the clinic. We're going to see how she responds to that tomorrow.
7. I am so excited about the photography clients I've been getting lately! They are so into my style and I love that. I can simply do what I do without any pressure to pull away from my style to make them happy. LOVE THAT!
8. Just got the call from the after hours clinic about Jayden's eyes and they believe it could be pink eye. Drops are being called in for the poor boy now.
9. I've started "homeschool" with Jayden on Monday, Wednesday, and Friday. There's only so much school you can do with a 2, almost 3, yr old but we do an interactive story, arts and crafts, fine motor activities, music skills, and nursery rhymes. I also do a letter of the day. Hopefully this will help him with his transition into the school system by next year.
10. Yesterday's arts and crafts assignment was a fall tree and I am surprised at how well it came out:

Busy Bees!!

We finally added an OT to Jayden's group of therapists and I'm happy to say that after a very rude encounter and cancellation of the first appt by one OT, we did end up with an AWESOME OT. I am definitely a true believer in that everything in life happens for a reason. I cannot say enough good things about Mrs. L. She's been here for 2 weeks now and she's taught me things about Jayden's sensory issues that I didn't understand. So with that said, we have therapy 3 days a week, and Jayden started a MMO program once a week. He goes on Mondays and he loves it! Yesterday he actually skipped to the door of the building singing "School, school, school!" It makes me feel good to know he loves it that much. He's also been having soccer games and practice, so between all of that and add in my photo shoots, we've been busy! Things are going well, health wise, and Jayden is going to see a neurologist in New Orleans soon for the seizures. I just wanted to post an update on us and I'll leave you with some pictures that Jayden actually cooperated with me to get. This certainly makes this photographer mom happy :D

When will he get a break?

Yesterday I called the nurse about Jayden's EEG results. She told me that they hadn't received his report yet, but she would call to request it and give me a call with the results. Now I went into all of this with the frame of mind "We are simply RULING OUT seizures.". I know that Jayden does have some concerning behaviors that appear to be seizure like, but I also had so many "specialists" telling me that it could very well be behavioral. So, in my mind, I had prepared myself for a normal report, especially since his CT scan was normal. Well the nurse called this morning and she sounded a bit concerned so I immediately knew they found something. She said "Jayden's EEG report is actually showing some seizure activity." My heart sank. I was fighting back tears b/c my son was playing on the floor right at my feet, and my husband was sitting across from me. Besides, imagine how that nurse would have felt if I went into hysterics over the phone?! So I kept my cool and she went on to tell me that he has already been referred to a neurologist and they will try to see him asap. I hung up the phone and my husband just looked at me. I told him that was the nurse about Jayden's EEG and that it did show some seizure activity. My husband said "Oh no..." At this point, we have no idea when he's having them b/c during his EEG, he did cry in the beginning, but he showed nothing like the behaviors we were concerned about (stiffening of his body, growling, blank stare, and sometimes drooling). He did fall asleep for the test and I know that seizures during sleep are common. So of course, now we worry. All we can do is wait on the appt and pray for some answers for our little guy. We are getting there b/c just a few months ago he was considered just a kid going through the terrible 2's. If you are the praying type, please eep our little family in your prayers!

And the hats are back...

Just as I suspected. When Jayden was "evaluated" last month by the behavior analyst, I blogged about it here and mentioned his strange use of hats:

"... he uses that hat to avoid eye contact when he isn't in control. Jayden started wearing hats like that when he was having speech and OT once a week. He would wake up and immediately look for a hat. It had to be b/c he knew he would have therapy and he wouldn't be in control. He ALWAYS had a hat on his head. He stopped wearing the hats about a month after they stopped coming and now he just grabs them as needed, like this morning."

Once he stopped having therapy in April, he stopped wearing the hats. We couldn't even get him to wear a hat if we wanted him to. Now, he's been back in therapy for 4 weeks now and the hats are back. 24/7. He even sleeps with the hat on. He HAS to have the hat on the counter, in his view, while he's taking a bath. And it goes right back on his head after I change his clothes. To Jayden, those hats are more than an accessory. They are a sense of security and control. So here is where my issue lies...I'm not sure if he will be able to wear his hats to school starting in January. Should I bring this point up to his behavior analyst and get her to start working on him not needing the hat? I worry about how it will affect him, but I know it is something that we need to address...

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...

Deprived

So today was Jayden's EEG. It was scheduled for 12:45 and the Drs office advised us to have him sleep deprived for the procedure b/c they would like to see some readings while he is asleep and using a sedative could have possibly affected the results. So, thus the adventure began last night. My husband and I stayed up with Jayden until a little after midnight and I woke up with him at 4am. Getting him up at 4 was not an issue (for him). 24 hour Noggin is awesome!! He was singing within 20minutes of being snatched out of bed. At 6, he asked to watch Spiderman 3, so we (he) watched that and then we watched some Michael Jackson videos. I could tell he was sleepy, but he wasn't going to give in to sleep, which was good for that point in time. One thing I found out today is that my boy is SO lovable when he is deprived of sleep. He just kept running up to me and throwing his arms around my neck and giving big, fish mouth kisses. Oh so sweet. Perhaps he was thanking me for allowing him to skip sleep??? LOL! We got to the hosital at 12:30 and registered and were sent up to the EEG area. He was still running around, sliding on the floor, and screaming to hear his echo. I honestly didn't think there was any chance he would fall asleep. We were called back and Jayden had to lie in a hospital bed and had about 20 or more electrodes attached to his head. He FREAKED out over having the electrodes placed on his head. It was so sad to watch. I know it didn't hurt him, but he just did not like it one bit. He would scream and cry and then remind himself that he was a big boy. Poor thing! After he was completely hooked up and had his head wrapped up, I was able to get on the bed with him and put his head in my lap. He screamed, kicked, cried, and pulled electrodes off during the first 10 minutes of the EEG. I told him that his wires were his spiderman webs and he said ok and settled a bit. He would whine every now and then but soon I saw his eyes get heavy and he quickly fell asleep. The rest of the test was a breeze. We won' get the results until sometime next week, so I'm praying or the best.

We got home and I put my sleepy boy in his bed and he immediately fell asleep. I took a 2 hour nap and got up to have dinner. Now Jayden is asleep, 30 minutes early after having a HUGE meltdown over bathtime. He drank his milk in bed and then told us night night. Went to bed without a fuss. Now it's my turn!

Busy Busy Busy

It's been extremely busy around here lately. As you know, Jayden's therapy has resumed, with the exception of occupational therapy. We are still waiting for him to be assigned to one and we may end up having to take him in to a clinic for his weekly OT. We will find out soon, hopefully. In the meantime, he's had two speech therapy sessions. The first one was a bit hard for him b/c he had to readjust to her coming with the fun bag of toys and then leaving before he was ready for her to take the bag away. The whole transitioning thing. This week, he did so well. He actually even worked with her and answered some questions and made animal sounds when asked. I was so proud of him but I try not to be "that mom" during therapy. LOL! As she was getting ready to leave, I could see him clenching on to a few toys from her bag and I knew he would not transition well, so I turned on Yo Gabba Gabba just before she left. He placed the toys in her bag and told her "Bye Bye!" Such a good boy and thank you Noggin for Yo Gabba Gabba! He's also had 2 sessions of behavioral therapy. The first was just a "getting to know you" type thing. This week she started the ABLLS assessment She was only able to get through half of the assessment this week and will complete it next week. Once the assessment is complete she will be able to get a notebook started for him so that we can work on the things he needs to work on both in therapy and at home. He didn't score as high as we thought he would have on some of the cognitive things, but we agree that it's mainly due to his attention span and hyperactivity, so it should get better once she starts to work on him with compliance. Towards the end of the session (well more like 20 minutes into the 1hr session) Jayden started to tear the room apart. Seriously tearing it up. Throwing toys around, emptying out containers and tossing the contents about, flipping chairs over, and just running around wildly. She tried to distract him with Barney, but that didn't work. She was completing his assessment and asking us questions about his development. I mentioned to her that he does this often, plays with toys for only a few minutes then he gets destructive. She told me that once she gets started on working with him after we know what goals he needs to meet, he will not be allowed to do any of that, so we will see. So far, she is doing what she is supposed to be doing with him so I can't complain.

Jayden also had his CT scan done on Tuesday. He was given a sedative, a medication used to treat insomnia, 30 minutes before his scan was scheduled. I recorded his reaction (20 minutes after he had the medicine):



It never fully slowed him down!! LOL! The tech wasn't concerned though. He was so very patient with Jayden. He rode him around on the table until Jayden was comfortable with the back and forth movements and jerking of the table. Then he held Jayden's head still for the scan. They ended up doing two scans and sent both results to the Dr. The Dr called that evening with the results. Nothing to be concerned about at all, but he did see that Jayden has sinusitis so he's on an antibiotic for that. Now we just wait to have his EEG done on Monday.

The house showings have picked up again. Stressful and tiring. I'm hoping that it sells soon. And as if I didn't already have enough on my plate, I signed up for online classes and they started on Tuesday! It's a medical biling and coding course and several of the credits earned can be transferred to my nursing school. What's scary is that I plan to return to nursing school in Jan, but this online course isn't scheduled to end until the end of Feb!! It's self paced though, so if I can stay on the ball and ahead of things, I may be able to finish it by the end of Jan, at the earliest. We'll see. Oh and some great news...My husband's last day of work is Sept 25!!! I'm so excited to spend more time with him...and to get more help at home with the house showings, therapies, drs appts, etc!

What a difference a complaint makes!!

So today was the day that Jayden was to begin ABA therapy and we were to meet with our new service coordinator through Early Intervention during that session. I had recently had the pleasure of speaking to a woman on the phone who introduced herself to me as our new service coordinator and she had a very nasty attitude. I, in turn, may have had an attitude with her as well ;) I was also in touch with the Board of Education and they let me know that they would be sending a monitor to this meeting to sit in and ask any questions. Also, my mom came along to sit in! LOL! So at 2pm, we arrive at the Child Development Clinic and the behavioral analyst comes out to greet us. As she walks us to the room, she turns to me with this look of concern and tells me that there is a monitor present from the BOE and she asked if I was aware. I nonchalantly told her "Yes, I knew." HAHA! Had her shaking in her boots. So we get there and I'm also greeted by a service coordinator who is NOT the woman with the attitude, thank you Lord. The lady we met seemed really nice and organized. She took notes throughout and asked me when he would be restarting his speech therapy (tomorrow morning) and OT. I hadn't heard from the OT yet so she wrote herself a note to call the OT to get the services started. I also mentioned to her about needing assistance transitioning him from Early Intervention into the St. Tammany Parish school system. She didn't hesitate to say that she could do that for me. She even wrote down the name of the school we plan to send him to. So, the first session of ABA therapy was basically just playtime for Jayden. I can totally understand her not wanting to jump right in on the first day so I wasn't bothered. The BA commented on how well he mimicked. He will basically mimic anything, but that's not considered language, so she just let him play and listened to any spontaneous words he would say. He said several and she picked up on them. There were several times though that he would say something and she'd mistake the word to mean something else. I just remained quiet so as not to be "THAT" mom. His speech therapist is much better at understanding what he says so I'm not concerned about that right now.She tried getting him to identify objects from flash cards but he pushed them away. He wanted nothing to do with her, just the toys. She would back off quickly when she saw he wasn't interested. Pretty much the entire hour was uneventful while he played but towards the end you could tell he was getting bored with the toys and ready to start getting destructive and throwing things. The BA showed me a sample progress report that she would complete with Jayden. Certain goals she would work towards with him. The monitor asked questions about his schedule and about his IFSP and the BA said that she wouldn't be able to update it until maybe his 3rd session with her b/c she wants to be sure what his goals need to be and since he is vocal and speaks, she doesn't think he's going to need much help. I told her, "Well that is the same thing the evaluation crew said last year in November when he was initially evaluated. Then once they truly started to work with him, the issues became apparent and here we are now." So she says she will definitely adjust his goals as she notices there are things he may need to work on. The monitor is going to return for the 3rd session. The monitor did end up leaving about 15 minutes before we did and when she left, the BA says "I didn't want to say this in front of her (the monitor), but I don't think you should send him to an autism school." I looked at her like WTF are you talking about?? Earlier when I was talking to the service coordinator about transitioning Jayden to the school system, I told her that I spoke with my friend in Louisiana who has 4 autistic children and she speaks highly of the school. Never did I say it was a school for autistic children. My friend I spoke with just happens to have 4 autistic children who receive the same services that Jayden is receiving. I told her "It's not an autism school, it's a regular school that does the IEPs for kids requiring special education services." Um, wow lady. She goes on to say "You don't want him to send him to school with kids who are autistic b/c he is clearly not and he will regress if he's in a class with non verbal students." OH MY GOD! That's why she waited until the monitor left. I am so sick of her view of autistic children all being completely non verbal. Has she not heard of asperger's?? Those kids generally have excellent language skills, yet they are still autistic. One thing I've learned in life (and throughout this fight with EI) is that people are all entitled to their own opinions and although I may not agree with the opinions, there are times that you just have to leave it be and carry on. I replied to her "he's not autistic speech" with "It's a regular school." No further explanation needed. To this point, she has not thoroughly evaluated Jayden the way his developmental pediatrician has, and like I have said on this blog before, I don't care what you want to label Jayden as, just provide the services that his Dr is requesting for him. So anyway, as we prepare to leave Jayden starts to get upset b/c it's a transition that he is not prepared to make. I mean, who wants to leave a colorful room filled with toys?!? LOL! So I make the huge mistake of ASKING Jayden "Do you want to clean up?" and he throws the container that the trucks belong in and falls out. The BA immediately scolds me! "You don't ask him, you tell him." Again, I zip my lips b/c I know full well that even if I said "Jayden, pick up the trucks", the same thing would have happened. She'll find out soon enough though. So as he's on the floor kicking and screaming and throwing the trucks around, she grabs his hand and makes him pick up 3 trucks (she actually picked them up and held his hand in hers at the same time) and was saying "GOOD JOB JAYDEN! GREAT CLEANING!" and Jayden was just kicking and screaming. Once she had the 3 trucks in the container she let his hand go. He immediately flipped the trucks back out though :/ I can totally get what she's trying to demonstrate, but lets be real here...I'm dealing with bad behavior every single day and it gets overwhelming. I can honestly say that I don't have the patience for that. Maybe I need to try harder. So as we grab our bags and are walking out of the room Jayden loses it and runs through the room screaming and knocking everything off of her tables. So I go to grab his hands and he throws himself under the table. So we all walk out of the room and she goes back and tells him to come to her. He grabs a truck and runs out. He's ready to go as long as he can keep the truck. The BA told us he can keep it and bring it back next week "since yall have a long walk to the car". HA!!

The new service coordinator walked with us to the parking lot and she told me that she would be in touch with me and she will try to make it to the next meeting next week to stay on the BA to get the IFSP updated for Jayden. She also wants to monitor Jayden's progress with this BA b/c she caught on to her "he doesn't really need this" attitude as well. Of course, the two times she's met him he behaved well, but once she starts to add any structure to his sessions, she will have her hands full and hopefully understand why I go to bed in tears very often. As far as her opinion on what is and isn't autism. Well, it's just her opinion.