Meltdowns!

Jimmy had been having meltdowns at school almost daily since the beginning of the year.  Though, since surgery, he has been so much better with loud noises!   What he is having problems with is remembering.  Since surgery his teachers have told me that he has regressed a lot.  He doesn't remember how to do the math that he knew before surgery, same with all his other subjects and that is when he has his meltdowns!  He gets so angry when he is given work that he doesn't know or remember how to do!  For a time I was having to pick him up from school 1-2 times a week! One time, after he got to school, I decided to color my hair.  No sooner did I get the color on my hair, I was called to pick him up from school!  I did start to realize that it was happening a lot in the mornings, so last week I started driving him to school, instead of him taking the bus.  During this time he has been much happier at school and does still grumble some doing school work, but now will ask for help.  For this part I give credit to his Therapist who has helped him with coping skills and his teachers who are more than happy to work with her on this.

His teachers are great with staying in touch with me throughout the day too.  By the time I pick him up from school, I already know what kind of day he has had!  As I told his teacher, the bus must be really rowdy, because at the beginning of the school year he WANTED to ride it!

We have a sedated MRI scheduled for next week and an appointment with his neurosurgeon during which I want to talk about his memory loss!

Life with Jimmy: It's Been A While!

Life with Jimmy: It's Been A While!: I'm bound and determined to start blogging regularly!  2016 was a crazy year for our family.  After Jimmy rode the rocking horse down th...

Brain Surgery

His surgery was 7 hours long!  We were given a private waiting room because they knew it would be long and they didn't want us seeing other families coming and going.  We were given hourly updates, which helped!  He ended up with 4 plates in his head, which we did not know until months later when I could feel tiny bumps in the front of his head and had xrays done (it was bone remodeling).

He slept a lot the first couple of days after surgery, and only complained about pain the first day.  We were in the hospital for a total of 5 days, it would have been four days, but he had to poop before they would release him!  After the first day after surgery all he wanted to do was go home!

 I felt that in order to help with his healing, he needed to eat and his ADHD medicine killed his appetite. At the time of his surgery he was almost 12 years old and only weighed 50 pounds, he was SO skinny! I asked the nurses not to start the medicine again and here we are over a year later and he's still not on any medicine.

So ready to leave to hospital!

His cat Juliette missed him a lot!

Hanging with his big sis Sydney!

He is currently having anger issues and meltdowns at school.  He's seeing a therapist for this, but we may have to find a medicine that will help with this.  I've had to go to school many times to pick him up because of his meltdowns.  His meltdowns are really starting to interfere with school.  Any recommendations on meds?  Ways to help with his meltdowns?  I would love to keep him off of meds, but it's starting to look like he needs it.  He's also having a lot of moments of confusion, such as getting on the wrong bus at school, instead of going to glass, wandering the halls at school, referring to men as women and women as men.  On the plus side, he now weighs 77 pounds!

It's Been A While!

I'm bound and determined to start blogging regularly!  2016 was a crazy year for our family.  After Jimmy rode the rocking horse down the stairs when he was 3 years old, they did an MRI at Children's Hospital Cincinnati.  They found a 3mm cyst/tumor on his brain. THEY NEVER TOLD US!  They did an MRI on him the next year after he nearly drowned and still did not mention it.  When Jimmy was 7 years old we were sent to Children's to have him tested for autism.  That is when the doctor told us about the cyst.  She wanted an MRI to see if it had grown.  At that time it had not grown and we were told they would just keep an eye on it.  This MRI shows when the cyst hit 10mm and they decided that it needed to be removed.  

Our original surgery date was February 3, 2016, a few weeks before they changed it to February 10th. Funny thing, at Children's Hospital, if it's not emergency surgery, they consider it elective surgery...you know, like a boob job!  That meant that we would not know the time of surgery until the morning of!  Thank goodness we had an early surgery, 7am.  It was a 7 hour surgery!  More about the surgery in my next post.

School, Unfortunately

I have loved Jimmy's school and his teachers, especially the one he has had for the past two years. He has an IEP which we meet yearly to update.  This year the week before the IEP meeting, his teacher wanted to meet to discuss his behavior. I was under the impression that this was an informal meeting. I get there and not only is his IEP teacher there, but his speech therapist, occupational therapist and his IEP teacher's boss. I'm not going to name names, but I am still furious with them and no longer trust them. At this meeting his teacher's boss brought up all these services that I should sign Jimmy up for. Medicaid....what, we have insurance. DDS (developmental disabilities services). I really felt blindsided by this meeting.

We had just received the autism diagnosis in December and to get in to Children's Hospital for autism services it's a 6-9 month wait for some doctors.  I had not had the chance before this meeting in March to talk with a doctor yet.  This meeting ended at around 2pm. I had told them I wasn't sure about these services, even though the IEP boss said I needed to look into it right away.

About 9am the next morning Children's Services called me and said that someone from the school, the investigator said she could tell it was someone from the school because of the way they described his disabilities, reported that I sent him to school in clothes covered in urine and feces and he was dirty and smelled (he is sent to school bathed and in clean clothing!). As she was talking to me, I suppose she could see all his medical appointments or records on her computer, she said, "I think someone at the school has it out for you, because if this were the case, it would have been reported by one of the many doctors you see at Children's."

I cried for 3 days. I could not believe that I was being investigated for neglect of a child that I have stayed up with for 48 hours during some periods when his meds were keeping him awake. Everything I do is for my kids!

My thinking is that when I downplayed the Medicaid and DDS, the IEP boss went back to his office, he called 241-Kids and reported me, anonymously to get an investigation going, perhaps as a scare tactic.  If I were to get on Medicaid, the school could bill Medicaid for his therapies at school. When the school was called the investigator said that they reported to her that I wasn't doing enough for his autism, which I now question whether or not he really has, but that will be my next blog.

Last week I finally received notice from Children's Services that the complaint was unfounded and the case was closed. They never saw my son, they could just see from all his medical records that I was doing everything I could.

No longer do I trust the school. I have revoked their permissions to talk to his doctors. I allowed them to talk to them while he was being tested for autism. The school had already labeled him as autistic, before the diagnosis. That got them $11,000 per year, for Jimmy. That get this every year for each autistic child. I'm so happy Jimmy is such a benefit to them. I wonder what they would get if I signed him up for DDS. He is so precious to me, it is appalling that the school would try to get to me by calling Children's Services on us! I am still so hurt by this. His IEP teacher I had nominated for teacher of the week, which she got. I don't think she called, I think her boss did, but I do think she knew he was going to do it!

Results!

In December 2014, a few weeks before Christmas, Dr. Holly Barnard gave me results from her tests with Jimmy and the results were that he is on the Autism Spectrum. Not too sure how I feel about that diagnosis and whether it is accurate. Jimmy's school was happy to hear it because to start with, before the doctor's diagnosis they had already gave him the ASD label. I have since found out that the school gets $11,000 per year per autistic child. Now I wonder if it was a mistake to let the Doctor and Teacher talk.

I have a therapist friend (she has worked with Jimmy) who has always said that she didn't think Jimmy was ASD, she thinks he has a Sensory Processing Disorder, which none of the doctors have ever considered. With that being said, I basically gave the school full disclosure with the doctors and the school could direct them in which ever way the wanted. I have since revoked permission for the school to talk to the doctors.

I can't believe my sweet boy turned 11 last week!!!! For his birthday we wanted a very hard to find Legos set Monster Fighters Train. I did find it for him and he was very happy!

He absolutely LOVES YouTube and I've had to ban him from it, because he repeats what he hears and sometimes it's not nice!

Many Doctors, Many Tests and No Answers

Well my sweet boy turned 10 in May! I can't believe we are in the double digits now! He is as sweet as ever too. He has become more outgoing which I think is due to his IEP teacher this year, she will be his teacher next year too, granted next year starts August 20th!

He visited many doctors and therapists last year and they couldn't agree what, if anything is wrong with him (I think he's perfect). They have it narrowed down to him being on the autism spectrum or a cognitive disorder due to a traumatic brain injury. I just googled cognitive disorder and I seriously don't think he has it. They want to start testing him all over again and I really don't know about that. We had many, many appointments last year and I think it's hard on him. Coming back from the last one last year I had a stroke in the car on the expressway with my baby in the car!!! All is well now, but he was so worried about me. I begged and they let me come home on Christmas Eve. I called him everyday and he always told me that he looked all over for me and was worried and wanted me to come home. I have to admit, it made me cry.

 

The first full week school is back he has two appointments, on for an MRI to keep tabs on the cyst on his brain and the second one is with the Psychologist that ordered all these tests last year. I think I will see what she has to say and then make my decision on further testing from there. 

Testing, Testing, Testing!

It seems like all we've been doing lately is driving down to Cincinnati Children's Hospital for testing!  First they did developmental testing to see if any of his medical incidents had caused any brain damage. During an MRI we discovered that he had a brain cyst. I say "we" because the hospital already knew! They found it when he was 3 years old and had rode the rocking horse down the steps. No one EVER told us. The good news is that it has not grown since he was three! They will continue to keep an eye on it.

Now we are starting testing to see if he is on the Autism Spectrum. Seems to me like if he was, it should have been discovered sooner. Tomorrow we go in for speech evaluation, which is supposedly different from the developmental one they gave him over the summer. He will then go in for the actual autism testing in December for which we will receive the results in May 2014! To me, if their waiting list is that long that we have to wait 5 months for the results, then Cincinnati Children's needs to hire more doctors!

Today, I just heard from Jimmy's teacher that he isn't going from one class to another very well on his own. He is hiding between specials and going back to his IEP class. Just don't know what to do anymore. I think the fact that he won't swallow pills and we are limited to the Daytrana Patch isn't helping.  I may have to discuss other options with our doctor. 

On a more fun subject, Jimmy has started karate class at Pro Martial Arts. He looks really cute in his uniform. The class is 40 minutes long and he seems to start to lose interest after about 30 minutes.

We did have a little incident over the weekend when he did one of his stances, poop feel out of his pants! Lol! They talked to him about hygiene and all was forgotten.

The Holidays

Jimmy was very excited for the holidays. That was all he talked about for the whole month of December! He had a good Christmas and loved all of his gifts. A few days after christmas we got snow! I love snow. In past years Jimmy has been a little iffy with snow. One year I remember having to beg him to go out and play in the snow with me! This year HE begged to go out! As you can see from the pics he had a lot of fun!

He has been on a waiting list with Children's Hospital of Cincinnati to be evaluated for Autism. I called over the summer to see where we stood on the waiting list and they said he would be called in November. Well November has come and gone and so far we have been on the waiting list for 13 months! I think it's ridiculous.  I am currently filling out forms from Jimmy's school so he can be evaluated by the Kelly O'Leary Center. I beginning to think that he does not have Autism. I know there are many forms of it, but I just don't think he has it!.

He's doing much better in school, fewer bathroom accidents, which is always good! Lately the latest he has stayed up at night was 3am and that beats the 7:30 am during the summer (he would then wake up at 10am). Melatonin sometimes helps, but most of the time it doesn't!  He needs something to do! He would not be good at soccer, not a team player. So I'm sort of at a loss on that subject.

By the beginning of 3rd grade, I would like to get him sleeping in his own room at night, going to bed at a nice, decent hour, and no bathroom accidents. I would also like to see him have at least one friend, girl or boy. It breaks my heart that he doesn't have any friends at all. While in school he always has a teacher or an IEP aid with him. So that doesn't really help him find friends. I will be blogging more, at least once a week (fingers crossed) and hopefully I will find a direction for this blog to go.

Loooonnnnng Thanksgiving Weekend

After Jimmy's 5-day break from school for Thanksgiving, I'm beginning to wonder if his ADHD medicine is working at all. He is on the Daytrana patch which we just upped from 10mg to 15mg three weeks ago. He is on the patch because he would not take any medicine in pill form. I would find them hidden in drawers, plants (the plants had no problems paying attention)

This whole weekend he has screamed at the top of his lungs while playing (he says he is singing). But it's very nerve racking! We have asked him not to be so loud, but he continues to scream!

He's also been very sweet. Last night he was laying in bed with me, playing on his Leapster and told me that I was his hero (awwww). We watched the SpongeBob Christmas Special which he just loved!

The other thing with this long weekend is he ate sooooo much! I'm glad he is eating, with the ADHD medicine he hardly eats, but I bet I fixed him something to eat at least 8-10 times each day! I guess Santa have to bring him bigger clothes ;) To be fair, he is the probably the oldest in his class, but certainly not the biggest! So I'm quite tickled that he's eating!!!

The Rocking Horse Incident

When Jimmy was 3 years old, he thought it would be totally cool to ride a rocking horse down a flight of steps! That little feat didn't end quite like he wanted it to. After we heard the blood curdling scream, we ran to Jimmy who had a huge knot on his head and a hell of a shiner.  I suggested a hospital to Rob, who reminded me that the doctor told us that we only needed to take him to the emergency room if vomiting was involved. No sooner than the words came out of his mouth, Jimmy started puking!!!  So Rob took him to Bethesda North Hospital instead of Children's because I remembered that a friend of mine said Children's Emergency room had been pretty packed lately. I figured if Bethesda thought he needed to be at Children's and they sent him via ambulance he would be seen quicker and that is exactly how it shook out.

I rode in the ambulance with Jimmy, I remember it was St. Patty's Day because the medic was wearing a little green hat.  They strapped Jimmy into a gurney and about 10 minutes into the ride, he had the gurney straps undone and was trying to get into some of the supplies! What a trooper. We spent about 4 hours in the emergency room with Jimmy who was so aggravated because they had the pulse rate monitor on the thumb he wanted to suck.  Sydney wouldn't look straight at him for a week because she couldn't stand seeing his black eye!

Jimmy's Arrival

Jimmy was born on May 14, 2004. I was actually scheduled for a c-section on May 13th, but the stupid doctor cancelled it. I went to the doctor on May 14th because something just didn't feel right. He actually wasn't moving, which was unusual, because he always woke me (yes even in my tummy) between 2 and 3 in the morning. Also, I couldn't see his tiny little foot outline on my stomach. I started bleeding heavily at the doctor's office and told the doctor who blew me off and said it was just break through bleeding. I decided to go to the hospital across the street and they immediately thought something was wrong. They started monitoring Jimmy and he kept crashing. I heard the anesthesiologist tell one of the nurses to get the doctor over to the hospital now! I remember the resident riding on the gurney with me down the hallway. I thought they only did that on TV! In the operating room I looked up and could see the reflection of the scaple in the doctor's hand, as he waited for me to go under. I really had no fear, I remember thinking "I hope he's patient..." then I was out! I awoke four hours later and there was Rob holding a tiny Jimmy. The doctors had told me during my pregnancy that he was going to be a big baby because of my gestational diabetes. He weighed in a little over 5 pounds! A nurse told me that my placenta abrupted, which is also why I had to get a blood transfusion, two pints! My original c-section had been scheduled to prevent the abruption.  I don't know if all the drama during his delivery, and lack of a good doctor, has anything to do with his developmental delays. I'm just glad he made it!

Meet Jimmy

Meet the awesome Jimmy! He is my wonderful and quirky 8 year old son. He has been diagnosed with ADHD, but we will probably be having him tested for other "things".  He is such a sweetie, I just wished I had a 4th of his energy! Heck, an 8th would be fantastic!  Over the next few days I will be writing more about Jimmy, his ADHD, and why if he were a cat he'd have about 5 or 6 lives left. It's interesting, trust me!