We are still waiting for the contract for the service dog to come, we are trying to brainstorm some fundraising ideas we can use once we are able to start that leg of this little journey. If you have any great ideas, pass them our way.
Sunday night we made our annual Gingerbread House. Every year my family makes them, and we have quite a few rules. The icing can only be white, it must all be edible, etc. This year I tried all night to get Deeds to help me decorate the house. I thought he would get a big kick out of the candy. Instead the conversation went like this:
Mommy: “JD want to help mommy decorate the gingerbread house?”
10 minutes later
Mommy: “Deeds, what should we do next?”
JD: “Play iPod!”
Needless to say he wasn’t much help. At the end of the night he did help add a few last-minute touches, and so now he is convinced it is all his and no one else should get near it. I’ve had to put it up pretty high so he can’t get to it and so it’s not really being enjoyed at our house since the only one tall enough to see it is Daddy. We should find a neighbor to give it too so someone can enjoy it.
We have so much to be thankful for this year. It’s been a rough one for us but blessings still seem to find us around each corner. We have really learned not to take anything for granted.
Playing the iPod with his cousin watching the fun.
We had our family dinner a day early so that we could all be together. While trying to give everyone an update on JD’s new diagnosis and the Service Dog info Deeds decided he wanted me to stop talking. He came over to me and told me just that “Stop talking, mom stop talking.”
JD got a bit overstimulated around dinner time so we popped out the iPod and he was an angel from there on out. Gwen, his little sister, turns one tomorrow so we had ice cream cake (ended up just being ice cream) and opened presents for her. She was pretty stoic about the whole ordeal. I think I’ll get her a cupcake or something tomorrow so she can actually dig in and we can get some messy photo’s.
Gwen's Birthday Cake
We learned tonight that JD loves Jell-o, that he is becoming even more concerned about having his food touching other food on the plate and he will not touch turkey with a 10 foot pole. He is also developing an issue with what directions we turn when we are driving. It started on a particular street and now he is doing it at a few others. If you pass somewhere he thinks you should have turned, or turn the opposite direction that where he wants you to he will melt down in the back of the car. Screaming until you either make it to your destination or flip around and do what he wants. It’s not my favorite quirk since we usually have to just hear him scream until we reach wherever it is that we were headed.
Checking out a cousin's Nintendo DS
Sorry for the lapse in blogs recently. After the week we had with all the testing and everything mommy and the kids all got pretty nasty colds/bronchitis. We’ve been laying low for a few days and hoping it clears up before Thanksgiving festivities.
The Video EEG results came back yesterday and JD did not have any seizures while he was being monitored! We have opted to just watch him till his next neurology appointment for seizures rather than start him on anti-seizure medication now.
Today we had our phone interview with 4 Paws for Ability, and they are sending the contract in the mail for us to sign and return! He got approved and we couldn’t be happier. Once we get the contract taken care of we will start the process of fund-raising for the dog. They cost $22,000 to train and we will be committing to raising $13,000 of that for 4 Paws. We know it’ll be quite a process but we couldn’t be more thrilled about what doors this could open for Deeds. If JD continues to have seizures we will also be able to get the service dog trained for assistance with them as well. We are feeling very blessed!!
Wednesday afternoon Mom and I took JD up to the Primary Children’s Medical Center (PCMC) building at the Riverton Hospital for Deeds MRI. He was such a good boy while they were prepping him. It was amazing the difference in a staff that is used to not only children, but children with special needs. He didn’t even have to be strapped down for the IV placement. They had me hold him but it was much smoother than at the ER on Sunday. The real trouble came with the sedation for the MRI. It took a while but after maxing him out on three different medications he finally went under. If he had woken up one more time there was nothing more they could give him and they would have had to cancel the MRI. The nurse told us afterwords that if he ever has to be put under again for anything to tell the doctors to check his records and ask for general anesthesia. Once the MRI was done he woke up fairly quickly and was ready to get out of there ASAP.
This morning we met with the Neurologist up at PCMC in Salt Lake. After two different doctors reviewed his charts, medical history and did a thorough exam on him we were told that the MRI came back abnormal. Deeds was diagnosed with Periventricular Leukomalacia (PVL) and Mild Cerebral Palsy (CP). Stunned silence was my first reply. I thought that they would just come back and say to watch him for more seizures. I never expected us to leave with two additional diagnoses for JD on top of his autism. My first question was if the new diagnoses would negate his autism diagnoses and was told in his case the answer was no. Next I asked about the CP, and if JD would end up in a wheel chair. I was assured that he should not digress any further with the CP, but that we might start to notice that he isn’t able to accomplish some things others can physically as he gets older. Like the autism, Cerebral Palsy covers a wide range and Deeds is at the mild end of the roller coaster.
I did a lot of looking online when I got home and feel much more comfortable (or at least not panicked) about the new developments in JD’s life. The CP diagnosis fits with a lot of the irregularities JD has had since birth. The rigid muscles, and stiffness. How he never really crawled but would arch his back and scoot around. The toe walking and running, and abnormal sensation. We thought he just wasn’t coordinated but it’s more than just that. Once again I have to remind myself that he is STILL JD. The diagnoses doesn’t change who he is. It means he might need help with somethings that others take for granted. We are still learning about it, so sorry if I can’t answer many questions.
This all leads us back to the seizures. The doctor had us keep JD’s EEG appointment in Riverton for this afternoon. She said she needed to know a bit more about the seizures, like if he was having absence seizures throughout the day. I called this evening but they were still waiting on the results so I will call again tomorrow if we don’t hear back. She did teach me how to handle a grand mal or tonic-colonic seizure and reassured me that they all look way worse than they are. Oddly enough we had a Golden Retriever growing up that had epilepsy, so I had an idea just how frightening they can be. She said that JD may still be acting “out of it” this week from the episodes he had Sunday but that it is hard to tell because he’s had to go through so much sedation for all the tests. If JD is having absence seizures then we will need to put him on some medication to try to control them. If he is not we have opted out of doing medication right now and we’ll see how he does until his next neurology appointment in a couple of months. Depending on what the EEG says tomorrow we may call the place that we are applying for the service dog from and mention that we might also need the dog to help alert JD of seizures. If JD is approved that is… still waiting.
I will keep everyone posted on the results of the EEG. JD is doing well through all this, and he is my brave little boy. I’m shocked he behaved as well as he did during everything.
Today was a first for us. JD started the morning off with a bang by having two seizures. After the second one my parents came over and my mother and I took JD into the ER while grandpa watched Gwen (Thanks Dad). Once we got there JD seemed to be just fine. Not a care in the world and very content to play in the automatic doors until they called him back.
He was not thrilled about the hospital bracelet so we finally let him color it, even then we finally had to just take it off his wrist. When the doctor came in he asked us where the two year old went that he was supposed to see. My mom pointed to JD and said, “right there”. Then he went on and on about how tall JD was. Poor Deeds didn’t like the doctor from the moment he came into his room.
The doctor said that it doesn’t sound like Deeds had a grand mal seizure since JD’s eyes didn’t roll back into his head when convulsing. He said they wanted to run some blood work and do a CAT scan to make sure there was no swelling in the brain or tumors.
The blood work was first. When just two nurses came in and asked how we thought he would react to getting his blood drawn I laughed. I told them there was probably no way he would hold still and that he was quite strong. A few minutes later they came back with a restraint system and a third nurse. It took all four of us and the restraint system to get the IV into his little arm. I was very thankful they were able to get a good shot on the first stick and we didn’t have to try multiple times like they had warned. We had to wrap up the arm with the IV so that he couldn’t pull it out. We put a little “bandage” on his kitty cat that he took into the hospital with him. It really seemed to make him feel better.
Kitty Cat all bandaged up
When they came back to get him for the CAT scan the radiologists asked if I thought he would hold still and I once again chuckled. I said no. He told me they would try first. The nurse even made a comment to him as we walked by that JD wouldn’t hold still. Needless to say it did not go well. We were walked back to our room where they told us that they would give JD a sedative to calm him down so he would hold still. After the first dose didn’t work, they gave him a full adult dose and we went back to try again. While he acted groggy and stoned it took two of us to hold him down and he still screamed and flailed when we tried to do the CAT scan. At this point the Doctor came back in and told me that we could just take him home and watch him and if he had another seizure come in then and do the scan. Or put him out completely and do the scan now. I told the doctor that we had already put him through so much that I would rather just get the scan done than run the risk of having to come back and put him through everything again.
After giving him three times the normal dosage of the medication to knock him out he was able to get the scan done. Even with all that medication in his little body he would not stop holding my hand. If I pulled my hand he would squeeze harder. I remember days when I would cry because he wouldn’t let me touch him, and here he was going through all this scary stuff and he wanted me to hold his hand.
I carried him back into his room and it took him a while to wake up. When he woke up he noticed he was still hooked up to the IV and before I could stop him he tugged on the line. It started to bleed a little but the nurses were great and came right in to take everything off him since he didn’t need it anymore. Once awake we were able to be discharged since they didn’t find anything in the blood work or CAT scan that would cause the seizures. We were told to follow-up with JD’s normal doctor and look into getting and EEG done. I am hoping this is a one time situation but from what I came home and read online, it’s not uncommon for those with autism to have issues with seizures.
Right now Deeds is still quite loopy and can’t really walk on his own but I am happy that we are back home. Having Jeremy home from work is nice too since now mommy is emotionally and physically quite tired from the days events.
Yesterday afternoon it was snowing. Not a lot mind you, just little flurries. Apparently it was enough to get JD all worked up on a short drive with him. He has never had a problem with snow before but for 25 minutes in the car he melted down about it. He begged me to “fix it” or “stop it”. I don’t know if watching it fall while we were driving was too much stimulation for him but he was NOT happy about it. Hopefully it was a one time occurrence.
This week has been a tough one for Deeds and his meltdowns. He seems to have a lot more moments of absent-mindedness of late. I’m hoping it’s just a little rough patch he’s hit. Honestly mommy has had a cold so it may just be my patience is a lot thinner since I’m sick. Lets sure hope so.
The place we applied for JD’s service dog has cashed his application fee check so hopefully that means we will be hearing from them soon. Cross your fingers, toes and nose hairs. All prayers are appreciated.
One of our biggest goals with JD a few months ago was pointing. Not only would he not follow when someone else was pointing, but he couldn’t point on his own. To help with this dilemma we started to use the iPod touch. Since he would have to point to touch the screen we started with matching games, flash cards and shape puzzles. He was hooked within the first 10 minutes. He can still struggle following what others are pointing at but after a while he got his pointing down, however we had created a monster with the iPod. It became his and he wanted it the minute he woke up every morning until he went to bed each night. We started to slowly take it away from him and now he only gets it for about 30 minutes on Sunday and as a reward when sitting quietly in a cart during grocery shopping trips. Alright I’ll admit sometimes when he has a really rough day and mommy is worn out I will give it to him.
He no longer asks for the iPod every second of every day but he now has a new obsession.
Yes you read that correctly. JD is enthralled with plastic cups. He likes to stack them, line them up, and put them all back together. If anyone comes near his cups he will let them know in no uncertain terms that they are all his. We have gone through 2 sets of them since he decided they were all the rage. Thank goodness they are inexpensive.
For those of you that don’t know JD very well I need to explain how much he LOVES shapes. Many of his first words were shapes, and not just your typical heart, square and triangle. He loves to know the name of any shape. Once at a restaurant he kept saying octagon over and over again. We couldn’t figure out where he saw a octogon until we finally looked up at the ceiling and noticed the shape of the room was an octagon. We worked with him quite a bit so that he would start to say the name of an object instead of just the shape. He gets quite fixated on them. This brings us to the Tortilla Chip Fiasco of 2010.
JD can be quite a picky eater but he never refuses chips. He will ask for them often, especially “orange chips” which are Dorito’s. Today at his Structure play group at KOTM Deeds was quite upset about the chips they had for snack time. Normally we buy tortilla chips that are triangular in shape, but the ones they gave him with salsa were rectangular in shape. My first mistake was to empty the little bag of chips into his bowl. He yelled and screamed at me and then one by one put them all back into the bag, crumbs and all. Then when I figured out that he wouldn’t try them because of the shape the two therapists and I all tried to break them into triangles. Deeds would not be fooled, and continued to yell at us. Finally another little guy in his class wanted more chips so I said he could have JD’s and that sure got Deeds attention. He upturned the bag and put all the chips back into his bowl and told me in no uncertain terms that they were his chips.
Finally after 15-20 minutes of trying to get him to try the chips it was time to clean up. While picking up the chips I found one that was a square and offered it to him and the little stinker gobbled it up. After he ate the square one I guess he decided the rectangle ones weren’t so bad and made everyone wait while he finished his chips.
I can’t really blame him, it’s kind of been a melt down kind of day. They come around, where mommy and daddy can’t do anything to help calm him down. Most of the time when you try things it just makes it worse. We have a couple of tricks like letting him swing, throwing him in the air (which he is getting too big for ) and having him hang on his gym rings we mounted downstairs.
It’s been a week and we are still waiting on word about his approval for the service dog. I’m not holding my breath we will hear within the month but I really hope so since it’s causing mommy anxiety.
Last year around the holidays JD had a very limited vocabulary. It was pretty basic but when the Christmas lights started to show up around the neighborhood he got so excited. He has always adored and been fixated with lights. It doesn’t matter if they are big or small, close enough to touch or far away, he loves them. I started to say to him “Deeds, see the lights? They are pretty pretty.” Soon JD was uttering his first phrase.
“Ya yights, ya yights! ohhhh priddy priddy!”
Granted now I realize that the Echolalia played a big part in him repeating the phrase (over and over) but it was still a breakthrough for us. I am reminded of this because Christmas lights are starting to pop up already and he still says “Ohhhh pretty pretty.” While putting away our Halloween decorations last night we decided to hang up the two strands of lights we own. We aren’t going to bust out the tree yet but we decided a couple of lights wouldn’t hurt.
It’s thrown JD into a frenzy. He woke up this morning and the first thing he did is go plug the lights in. All day I’ve been unplugging them and when I turn around they are magically back on again. I finally caught him red handed!!
- JD plugging in “ya yights”
This afternoon we also went and voted. It was quite the experience. I had to get out of line twice because he kept bolting out the door. I decided to just let him scream and had a death grip on him while clutching his sister in my other arm. This posed a problem, how would I vote with both arms full. EASY, I trapped JD between my knees and viola! Sure he hated it, yes he screamed and wow did we get some bad looks from other voters, but WE DID IT! Every little task we get done when I’m alone with the kids is a mountain, but I’m so happy when we get to the other side.
Last Wednesday we sent in the application for Deeds to get an Autism Service Dog. I know even if he is approved we have a long road ahead of us with the fund-raising and training, but the waiting to find out if he will be approved for a dog is what is the killer for me. We talked about it for so long and so the fact that we made the decision doesn’t matter until we hear back about the dog is agonizing.
JD loved Halloween. We practiced trick-or-treating for about a week before the big night. It took Daddy 45 minutes to coax Deeds into the costume for the first time. It was a comedy of errors but he finally tried it on and then for the next 4 days we had struggles getting him to take it off. When it came time to go door to door it was raining. We tried to tell him that we were just going to stay home but that WAS NOT an option for him. He was determined so I grabbed two umbrella’s and JD and I went out while Dad stayed home with little sister. 2 hours later JD was still going strong and quite upset when I made him go home. His favorite parts of the evening were seeing two kids dressed as Brobee and Foofa from Yo Gabba Gabba, and ringing people’s door bells. It didn’t matter if the door was already open he rang every single door bell at least once. Don’t be under the delusion that we covered a lot of ground during that 2 hours.