Daddy picking up Deeds after his first day at the new school
Deeds has been able to write his name “JD” for a couple of months now. It’s getting more and more recognizable. Yesterday after he got home from his first full day of school he was playing with daddy and Magpie in his room. They decided to color and next thing I know Jeremy comes down stairs and shows me this:
I told Jer that he could work on improving his handwriting and then he told me that Deeds did it. I chuckled and asked if he held his hand and helped him and he said no. Beaming with pride my sweet husband then explained how Deeds just started to write it. He got stuck on the G, and Jeremy had to help him sound it out and then he forgot the E at first but other than that he did it all on his own. I didn’t even know he could write all those letters let alone put them together!
When Deeds was in early intervention one of his terapists (we love you Kimber!) told us not to work too much on letters and numbers with him but to focus on other things he needed help with, that he would probably figure it all out on his own because of his love of shapes and puzzles. I am glad we listened to her and helped him with other areas because she was right. He isn’t even 4 years old yet and he is sure putting things together. To go from a kid we had to teach how to color to this brings tears to my eyes. I also love that the first word he chose to write other than his name was Magpie’s, so sweet.
I should probably credit some of this spelling love to Super Why! a show on PBS Kids that Deeds discovered on his iPad while we were in Ohio. It’s one of those shows I don’t feel guilty about letting him watch a few in a row because I can tell he is really picking up what they are teaching during the show.
We are excited about the extra help and structure being in school full time will bring to him. Little sister sure missed him today but I’m sure it won’t take her long to realize she has mommy all to herself for the first time ever.
I just finished putting Deeds on the school bus for his first full day of school. He wasn’t excited that it was a different bus but he climbed right on. Magpie tried to follow and it broke my heart to pull her back and have her get all anxious as the doors closed and she wasn’t with her boy.
It is hard to think that my little man will be gone all day for 4 days a week and one of the days he is actually home is the day I work a double. I worry about it so much, that it’s too much time away from him but I really do hope and pray this new school can open up new worlds for him.
For those of you wondering what Magpie will be doing while Deeds is in school here is the plan. We will be having her in her kennel when Gwen is awake so that she doesn’t start to bond with little sister more than Deeds. She is currently curled up snoozing. Once sister goes down for a nap I will let Magpie out and work on training with her to keep her sharp and let her relax around the house and play in the backyard until Deeds gets home.
This past week we were one busy family. We had a birthday party for little sister Gwendolyn (Happy 2nd birthday baby miracle girl!). We had the party here at home and within the first hour my sister found Deeds trying to shut himself in the laundry closet. When she asked him what he was doing he replied that there were too many people. He did pretty well even with the chaos. Magpie was also overwhelmed with all the attention here at home where she is normally not working.
Happy Birthday Gwen!
Thanksgiving day was spectacular. Half our local extended family was out-of-town so it was just 7 adults and the 6 kids for dinner. It worked out fantastically and when Deeds was done with all the attention he just took the iPad into the other room and played for a while. He had Peanut butter and Honey instead of Turkey but that just left more for the rest of us. The turkey was tender and the Pumpkin Cheesecake I attempted was declared a winner and a new family tradition in the making.
Kids table for Thanksgiving
We reflected on all our blessings this past week and while I was sitting in church yesterday looking at Deeds laying next to Magpie I was reminded of all of you. The sports bloggers, autism parents, family, friends, strangers, news reporters…all of you. YOU have helped us, help our son. Our lives have changed, and each time we see Magpie we are reminded of your donations and help. Every dollar has had tears shed in gratitude over the past year and we are SO blessed.
We have now been able to go to church three weeks in a row. It is not something we’ve been able to do for a long time but Magpie is adjusting well and it has been spectacular.
At our very first therapy appointment and assessment with our 2-year-old son, before he ever had an actual diagnosis for anything, the therapist handed me a phone number and told me to call and put Deeds on the waiting list for a local autism preschool that ran for kids from the ages 3-5 years old.
I was confused, my son had JUST turned two but I did what she said and put him on the waiting list only to be told that even getting on the list that early there was a very good chance that he would never make it to the top before turning 5.
Flash forward almost two years to this past week. We got a call letting us know that a child was moving and an opening was available. They asked if we could come in for an assessment on the following Monday…today. This school takes only 36 students at a time, separated into 3 classrooms based on goals and needs.
After Jeremy, Deeds and I met with the teachers and staff at the GIANT Steps program for a few hours we found out that Deeds would indeed be a good fit and starts in their middle class next Tuesday!
What does this mean for our little man? He will be going to school 4 days a week for full days instead of the 2 afternoons that he attends now. The bus ride will be a bit longer than he is used to but I am very excited for the opportunity for him to be in this program and grow with the aid of such amazing people.
The treatment methods GIANT Steps use include discrete trial, ABA, TEACH, and Greenspan’s Floor-time, Kinder-Music along with pre-school activities and even more including parent classes (I’m excited about those!) Not only are we encouraged to volunteer in the classroom it is required for at least one hour a week. I am thrilled and cant wait to see how this helps Deeds.
We are sad to say goodbye to one of the autism programs we were in. We hope to stay going to their monthly parent classes when we can and maybe get him in to some classes with them this next summer. The teachers and staff there have helped Deeds so much and touched our hearts forever. I am sad we won’t even be able to go to his social class “one last time” with them since it is a holiday week. I called today to let them know Deeds got into GIANT Steps and they were so happy for him. Made it even harder to say goodbye after all they have done for us. We love you Kids on the Move and Bridges! You will ALWAYS be in our hearts and we’ll be back as often as we can!!!
Where does Magpie fit into all this. Sadly the class Deeds is going to be in has a child with a terrible dog allergy. She did go to the assessment with us and was fantastic but unless the other child ever moves into another class Magpie won’t even be able to come when I go volunteer. It is once again going to be a large adjustment for us all but we have to hope that it be a good choice for our boy and Magpie will continue to bond with him and do her amazing work with him when he is not in school.
I have always loved the color purple, but now it means even more to me because I love a child with epilepsy. November is epilepsy awareness month and the color for the ribbon is purple. I decided to dedicate today’s short post with just a few epilepsy facts for everyone:
- What causes Deeds epilepsy? For our little guy the doctors believe it is caused by the PVL brain damage he has, but for more than half of the people living with epilepsy they don’t know the cause.
- What is a seizure? A seizure is a burst of electrical activity in the brain that can trigger anything from a sensation of a twitching finger to a full Tonic-clonic seizure where a person will drop to the floor and convulse. Deeds has a couple of types of seizures. Seizures can last from a few seconds to multiple minutes.
- Epilepsy affects more than 300,000 children in the United States under the age of 15 years old.
Many children do outgrow forms of childhood epilepsy but since Deeds is associated with his PVL we aren’t sure yet if he will. Our goal is to try to make it 2 years with no seizures. So far they are actually increasing so we are trying to adjust medications to find the right balance. Our neurologist is fantastic and believes in starting the medication low and slowly increasing if possible to avoid over dosing him and having his brain function be impaired and learning affected.
Every once in a while I get an overwhelming need to tell everyone who helped make it possible for us to get Magpie thank you. As I sit and type this Deeds is watching a movie while laying his head on his best pal Magpie. She is truly a miracle for him and it chokes me up every time I see him bond so quickly with her. It makes me a little jealous sometimes because the bond with me, his own mother, took 3 years to build but I am just so excited he is growing so much.
With the recent news story Fox 13 did we have gotten a lot of people stopping us in public and with one exception everyone has been very supportive and caring. Deeds really is an amazing kid and I’m blessed to be his mom. He is our little miracle boy and I cry often when I ponder how lucky we are to have him and his sister in our lives.
Magpie has truly become a part of our family and I am so thankful to everyone who blogged, tweeted, donated, shared his story and spread his story last year to help us with the fundraising. Thank you for the many of you that rallied around us during his burn ten months ago. You cried with us and helped us through that difficult time. We will always carry all of you with us in our hearts and every time we look at this four-legged wonder.
For all those of you that may be new to our crazy piece of the universe. Welcome, we know you’ll love our little man and his black doggie as much as we do.
This morning we called the Pediatric Dentist close to our home and explained the tumble Deeds took last night. They were amazing and told us to just bring him right down. He was crying a lot about pain this morning and we couldn’t get him to eat or drink anything other than a sip of apple juice.
Deeds waiting for the xray
They tried to do some x-rays but Deeds would have NONE of that. After screaming for a while they finally decided to just let the Dentist take a look at his teeth. It took a bit to get him to lay down and then once we pulled out the iPad and turned on Super Why! he was good. He just ignored the staff bustling around him and the only other time he freaked out is when the Dentist started to try to do the exam. Once he touched Deeds our little guy was done.
Good news is that they aren’t going to have to pull the teeth and they are actually starting to descend again. Last night they were pushed so far up that it looked like he was teething but this morning they were getting better and then Jeremy took a picture just now and showed me and they are still improving.
We will be watching for infection, and if the teeth die or abscesses form then they will have to pull them. Worst case is that one of them doesn’t descend and actually fuses to a bone and then they would have to do surgery but he said that is highly unlikely.
Once again Magpie was fantastic and laid on the floor by her boy the entire time. She put her chin on the bed so I could tell she wanted to be up next to him but it was just too narrow. She’s had to work a lot lately and it brings tears to my eyes to see what a fantastic match she is for Deeds. The past couple days would have been much harder without her to comfort him.
Deeds smile during his School picture this year
Deeds Teeth all banged up but starting to look SO much better
Jeremy was walking out to the car with the kids tonight when Deeds took a tumble and fell face first on the driveway. When he got inside to me he was covered in blood and after cleaning off most of his face I realized the front four teeth were shoved up into his gums so it looked like he was teething. He was screaming and bleeding so badly we took him right into the ER. Now I know that the ER really can’t do anything about teeth. They told us to follow-up with a pediatric dentist tomorrow to make sure he didn’t damage the adult teeth since the baby ones went so far up. They also told us that they would probably just “drop back down.”
Magpie was FANTASTIC at the ER. Deeds was so calm and she just laid down on the bed with him and he calmed right down. Made this mommy a happy camper that she was able to make him comfortable.
We missed the first part of the news story on TV but we had set it to record so we caught it after all the commotion and then watched the second segment. We can’t embed the video’s on this blog but here are the links for those of you that might have missed it, or the many of you that are out-of-state.
First segment of the Deeds and Magpie news story
Second segment of the news story
Thank you all again. I’m so glad you get to see Magpie in action. So many of you have been with us since day one a year ago and helped us every step of the way. We feel like you are all family and we are eternally grateful for your love.
It’s been a rough couple of days at home for Deeds. He was even grumpy at the neurologist appointment at the children’s hospital today. He usually loves it there and wants to ride the elevator over and over but today he didn’t even want to ride once.
The the doctors are still trying to find the best seizure medication balance and since the past few weeks he’s been having what appears to be complex partial seizures along with a Tonic-clonic Seizure. His dosage has been increased again and we will see if we can find the right balance this time around. Our doctor said it may take some time to find the right balance since she started him on a very low dose. I’d rather have it be a low dose and work up than over dose him with medications that might slow him down.
We decided to decorate for Christmas last night to calm him down when he was having a rough night. He LOVES Christmas lights and so we got out our little tree and let the kids decorate it. The trip to get Magpie cost more than expected and add on the work Jeremy and I missed we believe we will be sticking a big red bow on Magpie to celebrate Christmas morning (and maybe next Christmas too…ha ha). Thank goodness the kids are young because I went through their toys and pulled some out they haven’t touched for a while and we’re going to wrap them up for them to open. I thought it was a great idea someone gave me! I am actually thinking of trying to find some other families that want to do the same thing so our kids will all have new-to-them toys on Christmas morning.
Here is a link for the little commercial that is airing for Deeds and Magpie’s story that will be on TV tomorrow night.
As I write this post Deeds is melting down. We had such a good evening with some family and ever since we got home it’s been one big battle. I wish I was better at knowing what triggers these episodes but nights like tonight they just come out of nowhere.
I snapped a couple of pictures of Daddy and Magpie trying to calm down our boy but now it’s time for me to attempt to help… I sure hope it isn’t going to be a long night.
Maggy loving her boy while he is having a meltdown.
What a good girl to let him lay on her.