Saturday, December 6, 2008

Words, sweet words!!!

So, we started Methyl B-12 shots on Dec 3rd. Everything I have read stated that we would see a difference within 24-48 hours ... or within that time frame. The next day at school Hayden's teachers seen language improvements with multiple 2 and 3-words sentences. Well, today we were sitting on the couch reading him books and he came up to us and brought us "Go Dog Go" to read. He flipped to the first page and said Go Dog! He proceeded to flip the page and then say doggie bikey, go! He flipped to the next page and said Buggie. The next page had a boat - he said boat. The next a car - he said car. He just kept flipping pages and while he was "reading" to us what was happening in the pages he showed total emotion with it. He almost acted it out. When he got the the last page (the book is about 12-14 pages long) he started singing the tune I sing for the "Dog Party" and do the flapping motion with the book that I always do for him! Not only was he reading for me, but he also sang for the first time ever!

My eyes welled up with tears and I just grabbed him and hugged him so tight! I couldn't believe it. I had to look at my husband and ask him if he had seen what I had just seen too. About 20 minutes passed and sure enough Hayden brought the same book back and went through it and did it again - exactly the same way, but with more articulation on the words and more excitement! I am just overjoyed! I can't believe after 1 shot we are seeing this huge improvement!

The second shot is tonight so hopefully we will see even bigger improvement throughout the week! I can only pray that this is the beginning of something beautiful!!!

Wednesday, November 5, 2008

Going to see doctors ...

Well, Monday we went to our pediatrician for a rash that had developed down Hayden's side. I thought at first it was a yeast rash by the way it had popped up, but as the days went on I wasn't as sure. It moved to his belly, so I needed to have it checked it. From the moment we walked in the door of the office at 2:50pm he was unhappy and uncooperative.

We sat in the back in a an exam room for exactly 45 minutes without anyone seeing us all the while he grew more and more upset. He started getting hot, hyper, anxious, tired, and uncontrollable. When Hayden gets this upset he starts to harm himself (head-banging, biting, and pinching). I attempted to control him with a "time-out" and a book on the chair next to me - not having it. Then, he flipped out! On a scale of 1-10, he was at a 20! I'm sure every parent in the place thought he was being murdered.

Finally, the doctor came in. She looked at me holding him in my lap and asked me what was going on. I told her I was keeping him from hitting himself or me. I then explained to her (through the screaming) that he had a rash and attempted to show it to her. As soon as we lifted his shirt and she asked me to let go of his arm he went to slapping and punching! I grabbed his arm again. She told me the rash was a virus, not yeast and she offered us a cream that I turned down because she said it doesn't do much for the rash. I'll use Epsom Salt - thanks!

Well, she walked out of the room to get me "information" about the rash that said he could attend school still with it and when she walked back in the door to give me the info she witnessed him punched me in the face. He busted my lip. She scooped him out of my arms, put him on the exam table, yelled for a nurse, and told me to "get out-leave". I was in shock and did just that. I don't know why, but I did. I went into the next room.

She came in a few seconds later - I was bawling my eyes out and bleeding - and she asked me if I was okay. I just laughed at her. Then she asked how she could help me. I asked for heavy metal testing and her to not fight me when I research something, be open-minded and give me an honest "medical" view-point of what I find. She agreed. For the first time I felt like she really cared about my son - even if it were for just a moment. So, we are getting heavy metal testing - copper, aluminum, mercury, and lead. Covered by insurance! :0)

When I got home, I called a DAN! doctor in the next town over. They usually have a 2-3 month wait to get in, but low and behold, we are seeing her on the 20th of this month! It's $300 out-of-pocket, but I hear it is worth that and then some! I am ecstatic to get in that fast and can't wait to start that testing for systemic yeast, B12 deficiency, and other stuff. I have so much that I want to ask about the post-natal steroids (Dexamethasone) that Hayden got in the NICU that I am reading eats holes in these kids intestines and stomach and I just am overwhelmed.

I will update once we have seen the DAN! doctor and let you know how it goes from there!

Saturday, October 25, 2008

Starting the diet!

So for the last few weeks I have been doing a ton of research about the Gluten-free/Casein-free/MSG-free/Dye-free diet for Hayden. We know Hayden is completely addicted to Gluten and has really bad reactions of aggression and hyperactivity with MSG and Dyes, especially Red40.Today, we started. I will be journaling here occasionally to update his progress on the diet and any changes in his behavior and sensory issues.

We decided not to cut out Casein for the first 2 weeks, but we did lower the intake of Casein, but totally cut out the other 3. So far today we have seen some involuntary facial movements - like he's tensing his muscles and almost like what you would see in a person going through withdrawls from Cocaine. A lot with the mouth and cheeks, and some with his eyes.

His behaviour has been a bit off, mostly more juvenile and whiny, but no over-baring. His urine smells just like yeast. It's so gross and breath-taking. He did sleep better for his nap - a solid 3 hours with very little motion. I was in shock! Good shock!

I guess my biggest concern was that he wouldn't eat the foods and would starve for a couple of days, but so far he has eaten at every meal. He is taking Organic Plant Enzymes with lunch and dinner and a yeast-killing multi-vitamin with lunch and so far he has done very well with both of them and we started them 3 days ago.

All-in-all I am SO proud of my little man! He is so much stronger than I give him credit for!

Saturday, September 6, 2008



So, we all know Hayden doesn't talk, right? Well, he rawrs! So, I came across this and I was just thinking, well, maybe ...

Thursday, September 4, 2008

Leapin' Ahead!

So, I couldn't resist posting a 2nd post today to let you all in on a great developmental toy that we received. It is by Leapfrog and is called the Little Leaps. It's this totally interactive gaming system that works through your DVD player. The best part ... it's cordless! The age range starts at 9 months and goes up. It says it cuts off at 36 months, but since Hayden is so developmentally delayed he is right smack in the middle and LOVES this system.


Tonight, while I was cleaning and cooking dinner, he played that game for 2 hours straight. Normally, I wouldn't allow that long in front of the TV, but he was just inthralled! You could hear him a block away screaming out answers and pressing buttons and getting so excited about it! I just want to run out and buy every DVD that comes with this system.


Needless to say, I am impressed! :0) I was skeptical that it would be way too young for him and pleasantly suprised that it's not! Picture included just in case anyone wants to run out and buy one!


Risperdol

So, we started a new medication a few days before school started to try to help Hayden focus and also to help him not have so many compulsive head-banging sessions a day. The new medication is called Risperdol and is primarily used to treat bi-polar disorder in adults and teens. It has recently been used in younger children that have autism spectrum disorders or spectrum-related disorders to help cope with compulsive behaviors.

Now that he has been on it for 2 weeks, I am really seeing a difference. We skipped one day of the medication and it was like a different child was living in my house. He had meltdown after meltdown and was so busy and unfocused I didn't know what way to turn. All I can say is I am very happy with the Risperdol.

Usually, I don't use prescription medications for Hayden. I do my very best to steer clear due to side-effects and dependancy issues. After reading up on Risperdol it shows that the main side-effect is weight gain. Well, as the parent of a child with Sensory Integration Disorder I can tell you that weight gain is a struggle for us. Because Hayden has sensory issues he is at the bottom of the growth curve, so bring on the weight gain! I am actually excited to see him eat!

With that in mind last night we treated him to McDonalds ... I know, I know! He ate all of his chicken nugget happy meal and two additional nuggets from my meal, so we are certainly eating! :0) Happy boy = Happy mommy! I will keep you posted on how the meds continue to work!

Friday, August 29, 2008

To sibling or not to sibling ... that is the question!

So, now that Hayden is 3 years old and has started school and is basically off of all "medical interventions", do we try for another? I have been given mixed information about the odds of having another micro-preemie with my kidney disease and after multiple miscarriages, do I want to start this all over again? Ugh! I am so confused!

I want another child. My husband says he wants another child. We have been without "birth control" measures for 18 months and nothing. Is the start of the infertility rollercoaster again? Who knows. All I know is, I want some better odds about the babies well-being before we decide what to do next.

Then comes the question to mind ... is this what's best for Hayden right now? He doesn't handle change so well because of his SPD. We were lucky he loved school, but a sibling ... that may pose too much stress right now. I just can't imagine him being an only child - think of all those holidays by himself and his kids wouldn't have aunt's or uncle's from him ... how sad!

Well, I think next week I will break down and call my OB/GYN and just see what's happening with my body ... wish me luck!

Monday, August 25, 2008

What a relief!


So, today was Hayden's first day at school! After all the apprehension of the first day ... he did Wonderfully! He loved it! He was up at 5:15am telling me "Go Kool" (short for let's go to school of course) even though our alarm was set for 6am. He wouldn't go back to sleep he was so wound up and excited!


So, we get to school and he didn't even notice that I left the room for a few minutes to go to the front desk to do paperwork and pay some last minute fees and stuff. When I came back in the room he was just playing his heart out. So, I told him bye-bye and he said it back and I left. When I got there to pick him up the teachers raved about how well-behaved he was. I was overjoyed!


His teacher said he sat in his chair, helped clean up, and listen and followed directions. I couldn't be happier. As soon as he seen me from across the room, he took a leap and ran to and jumped into my arms with a huge kiss and hug and was all smiles! I wanted to cry with joy! I think I was wrong about the school from the first glance and couldn't be happier that he is where he is!


We are looking forward to another wonderful day tomorrow! :0)

Saturday, August 23, 2008

It's been a while

Well, it's been a while since I have posted and Hayden has now turned 3 ... seems impossible! I can remember so vividly being in a hospital bed praying for him to be alive when he was born and now he is a happy, healthy three year old little boy! Time has just gotten away from us. Even sadder is that he starts school on Monday. Yes, school! Amazing right! I can hardly believe that my little boy will be going to school.

I thought I would be sad, but I think school will be good for him and allow me to catch up on some "me" time. It's only 4 hours, right? Wrong! I am dying that he will be away from me for that long every day! I have already had issues with the school. I tried for weeks to set up a meet and greet with his teacher and therapists, but it didn't happen. Now, I feel like we are walking in blindly. I am apprehensive about it at best.

I stopped in on Wednesday to drop off his shot record and physical form (that I guessed he needed, noone told me) and spoke briefly with his teacher. She was running around like a crazy person and thought that he was on the spectrum. Ahhhh! So, After a short conversation with her I still don't feel like she knows anything about my child and was left with the impression that she really didn't care. That's not the way to start out with a parent ... especially of a special needs child.

(Deep Breath) I just don't know. I spoke to a friend of mine at length about her son starting school this year and he goes for 6 hours a day and another friends son goes for 5 1/2 hours. I would be so lost. But, I may end up changing schools if things don't turn around fast. This teacher seemed so frazzeled and the class size is like 8 kids for 4 adults. What is there to be frazzeled about? Really? Ugh! I am just so upset by it all. We will have to wait and see. My stomach is in knots just thinking about what I walked into Wednesday!

One thing is for sure, it won't be a while before I post again!

Tuesday, July 29, 2008

A Second Opinion


Well, today we went to the Early Steps Clinic Evaluation. That was my way of getting a 2nd opinion on the diagnosis that we received. It was confirmed that Hayden has Sensory Integration Dysfunction (aka Sensory Processing Disorder) and Tactile Defensiveness. The developmental pediatrician that was in the meeting prescribed him Melatonin for his sleep issues. We start that tonight. It amazes me that even though I have complained about his weird sleep (or lack there of) patterns for the last 2 1/2 years that just now are we getting ANY kind of suggestion as to how to help him.


The child psychologist that was there was just stumped ... said so himself. He couldn't believe how busy Hayden was. I think Hayden wore him out ... hehe! I am happy with the end results and I don't feel like I have settled, mostly because I pursued a second opinion and spoke with a CARD representative at length.


Now, the next step is to get him into the correct therapy regimin and pattern. I haven't heard from the school yet, so I will be calling them tomorrow. I am anxious to meet his therapists and teachers and get insight into what kind of transition period we are looking at. We have adapted our home to him, so school will be a huge change. I will keep the blog updated as we go along.


Sunday, July 27, 2008

A Making In Progress ...

So, I found the most fantastic lady to make Hayden's weighted vest and weighted blanket. I am so very excited abou it. His vest is camoflouge and will be ready first thing in the morning and at that time I will be dropping off the rest of the fabric and PVC pellets for the blanket which should be done by the end of the week. It will be a Thomas the Train pattern. He's gonna love it! The lady that is making it is disabled and her name is Diane. She is so sweet and even customized Hayden's vest by embroidering (sp?) his name in the back. It's adorable! The vest is 4 pounds and the blanket will be 8 pounds.

Poor Hayden has an ear infection so I have to cut this short as he is crying for me. I will write more and include pictures maybe tomorrow! :0)

Thursday, July 24, 2008

Help!

No, don't help me - Hayden learned the sign today ... finally! He has been working on it for a while and would do it with some prompting, but earlier he just came up to me and did the sign. I asked him what he needed help with and he took my hand and brought me to the bucket under his table. I pulled it out and he reached up, put his arms around my neck and gave me the hugest hug! I cried! I was so very happy! He was able to communicate with me exactly what he needed and wanted for the first time ever! I am filled with joy right now and he was too! You could see it! :0)

Flapping!

So, for the last few weeks, Hayden has added new quirks to his list at a rate of about one per week. Last week was tongue scratching, this week ... flapping. Not just any flapping, the classic "W-form" autistic arm flapping. He does it when he gets excited. Like, today I was blow-drying my hair and I played with him blowing the warm air on his hair as he ran by and he was flapping so much I thought he was going to fly away.

The flapping saddens me so much that I want to cry. We aren't around any kids who do it for him to have picked it up, so it has to mean something. The thing is, the only thing really related to that flapping is "autism" itself. Ugh! Just seems like I can't get ahead no matter how hard I try with him. Poor baby! I just want to know how to help him!

Wednesday, July 23, 2008

ABA Therapy ... ?

So, I got a call this morning from Hayden's Early Steps Coordinator (M.M.). She gave me the email address to a certified ABA Therapist in town. I'm not exactly sure what ABA Therapy is and can't find any concrete information about it on-line, but it is somewhat pricey. It seems that unless you are military and have Tricare your insurance doesn't cover the therapy and you have to pay out of pocket. We will see. I may pay for a few sessions (at $45/hr) and see how it goes and if nothing terminate the service, still not sure. That's a lot of money in the great scheme of things. It would be helpful if I knew somebody who had been to ABA therapy with their child. It scares me that it is 100% linked with Autism and not really anything else ... well, other pervasive disorders, but not what Hayden has. I really need to just meet with this therapist and see. Her email back to me was very vague. Here's to skeptism and hoping (I guess).

Tuesday, July 22, 2008

Good News

So, today I spoke with Hayden's Early Steps coordinator about him going in front of the developmental board for a full evaluation and they gave me the green light. Hayden gets dropped by them on Aug 22, but they are keeping his case open until Aug 26 so that he can go through the testing. I am so happy! He will be seen by a child psychologist, a develpmental delay pediatrician, a behavioral specialist, a speech therapist, and an occupational therapist. This is monumental because it could mean some special funding for him to get certain types of therapies not offered to the normal child. It just so happens it is on the second day of school so he may be happy about that. I have a sneaky feeling he won't like being away from me for the first month or so.

We are also getting a CARD assessment done since the neurologist we seen (who is new to the area) didn't offer any suggestions or testing for him after saying Hayden didn't have Autism. Well, I agree that Hayden has tendancies, but is not autistic. If you read about Sensory processing disorder and tactile defensiveness all of the "tendancies" of autism are listed as normal behaviors for children with SPD and Tactile Defensiveness. We will see what comes of it. I am just so excited to actually have gotten in front of this board of specialists with him. They only see 3 children a month and not every child gets a green light to go to the meeting/evaluation. I am jumping for joy! Something good just has to come of this!

Monday, July 21, 2008

Getting Started

So, I decided to start a blog to maybe provide some insight to Hayden's disorder. I guess I also needed a place to pour my thoughts about SPD and how it changes every day. It amazes me that we started this journey nearly three years ago with a 1 pound child and now we have a 32 pound 40 inch toddler who will soon be starting developmental pre-k 3. Time flies.

So, I guess today was a monumental day for us with Occupational therapy because Hayden actually allowed J. J. (his therapist) to place headphones on him or several seconds at a time without flipping out and tonight he is wearing one of the last pairs of pajamas that we own with feet and long sleeves. He hates clothes to go below his knees or elbows. He usually claws himself until I cut them for him to wear them the way he likes them. We are doing good tonight though. I'm proud of him. He also allowed me to brush his hair without attacking me. He makes the funniest faces when you rub his head and I always have to wonder if it has to do with NICU and all the IV's he had in his head. Who knows.

I guess I could start with a list of dislikes and quirks for those of you who do not know Hayden.

Hayden will not let you brush his hair or teeth ...does not cry when he gets shots ... does not like to wear socks or shoes - they come off at least 40 times a trip to anywhere ... only eats a handful of foods and will gag and projectile vomit if he gets something in his mouth that does not feel/taste right to him ... humms all the time (so annoying) ... self-injures by hitting, slapping, biting, or clawing himself ... rams his head into walls, doors, the floor or anything else he can find that is hard ... does not like his hands, arms, or face to get dirty ... just started playing with play-doh and finger paint (used to hold his breath and pass out) ... lines objects up facing a certain direction with a cetain amount of space between them ... picks bumps/scabs/sores on himself or anyone else ... points out labels on tv or in books ... hugs backwards ... has severe seperation anxiety from me even with common people like his dad ... does not tolerate any type of hat on his head ... scratches his tongue ... and sniffs random things.

These are just what I can remember right now. It's nice to see it in list form. Never took the time to actually write it down like that. Hope that gives some insight into my daily frusterations.