Can you even imagine being told that your 9-year-old child needs an operation to literally cut apart the two halves of his brain. The surgery will help to stop debilitating seizure activity but that a lot of the outcome from the procedure is unknown such as how his language, mobility and even personality will be effected.
I have a dear friend who helped us with getting Magpie going through this right now.
Gina, over at Special Happens is giving her son Jackson his best chance in life and I want to do everything I can to help her help him. She is an amazing woman, full of support and love for those around her and I feel blessed to be able to return that love and hope some of you can help me.
Over the course of the next months the family will need a lot of assistance with travel and medical expenses so if you can donate please head over to do so HERE. I know times are tough, but we know first hand know how much even the donations of a simple dollar can help add up and bring tremendous encouragement in times of darkness!
For those of you unable to donate there is an awesome project going on to flood Jackson with cards from around the world. Grab your kids and have a fun evening with crayons and stickers making homemade banners and cards (Jackson loves trains, rainbows and balloons). Have no kids? No problem, who doesn’t love a postcard! Got a pet or an awesome service dog like Magpie, take a cute pic and send that to him. Lets let little Jackson (and his family) know that each card represents a prayer or thoughts of love for them during this time in their lives.
Cards/care packages/ letters:
Special Happens / St. Aubin Family
9609 S. University Blvd., #630303
Littleton, CO 80163
Deeds and his new friend JP
This morning Magpie and I realized the honeymoon was over. I was grumpy and wanted her to be on her A game and she wanted to play. Poor little thing and I took a little while to get into the swing of things but once we headed out for tracking she was all business. She once again found Deeds like a champion and then got fitted into her harness for our first group outing to the mall.
Deeds and Daddy heading out to do some tracking trails
Magpie getting ready to track her boy
My mom took both kids to the hotel for naps. Deeds had a seizure last night and was SO grumpy and tired we decided our first public outing would be easier with just Jeremy and I.
Magpie ran into some of Deeds friends at the mall.
Training class at the mall
The only issue we had in the mall was when I tried to walk into a store with a large stuffed tiger guarding the door. Magpie dug in all 4 paws and barked once. We’ve never heard her bark so it was a bit of a shock to me but I didn’t even think about that large tiger. The trainer came over and helped us handle it and we ended up having no more problems while we were walking around.
Once we finished we went back to the mall and grabbed my mom and the kids for some dinner. Our first restaurant outing with Magpie. It went fantastically. She just laid under the table and we chuckled as people sitting around us would all of a sudden notice her after she’d been laying there for 20 minutes. She never moved a muscle even with food falling around her.
Sister at dinner
Magpie at dinner under the table
The only tricky public outing we did today was the grocery store. There was a lot of people there and having the food at shelf level she would stop to sniff a bit but once I corrected her and told her to heel she snapped back into Magpie the wonder dog.
Deeds and Magpie relaxing before bed
She is now snuggled as close to Deeds as he will let her while he plays with the iPad before bed. We’ve worn her out today but she has proven her worth over and over again. She is starting to feel like a real part of the family and I am so grateful to 4 Paws for having such an amazing organization and to all those who helped get us here!
Friday night Deeds had one of his worst seizures to date. At first I wasn’t sure if it was a seizure but by the time all was said and done we were convinced. His neurologist also confirmed after that she believed it was a seizure and just unique because of the medication he is on.
With this seizure he fell down the stairs. He wasn’t hurt, but it sure gave me a scare.
Someone asked recently what good the service dog will be since it can’t actually stop a seizure. The dog can hopefully warn us that a seizure is coming on so that we can avoid things like falling down the stairs. When Deeds seizes he drops to the ground and if he is standing in a high area or in a bathtub this can be quite dangerous. The dogs are often helpful post seizure as well. After seizures Deeds is completely drained and often doesn’t communicate very well. Meltdowns occur within a few hours and we hope Magpie will be a calming influence on him to assist during these times.
Today Deeds neurologist at the children’s hospital let us know that our little man has Epilepsy since the seizures seem to be sticking around. The doctor decided it is time to start medication slowly to see if they can control his seizures. They aren’t that frequent right now but since last November when they started they are gradually increasing. The doctor talked to me for a long time about medication before I felt comfortable with options she gave us. The doctor was THRILLED when she heard about the service dog being trained in seizure alert.
I’m confused and slightly overwhelmed with yet another diagnosis. The list is sure growing, good news is that Deeds is doing really well with the autism so I guess bring it on. Together we can handle anything.
If you have had (or are having) a nightmare of a time potty training your child you might want to stop reading now.
Happy dance time!
Deeds is potty trained. We have expected the worst for over a year, and uh… it wasn’t bad. We’ve really only had a handful of accidents (never on carpet). They freak him out so much he seems to have practically potty trained himself. He is still in a diaper for naps and bedtime, and we’ve learned on days he has a seizure he will have more accidents but overall he is doing spectacular.
I have no advice for why this was so easy. NONE. We do ask OFTEN if he has to use the restroom but he is to the point now where he will just run in by himself with out us asking.
In a world where sometimes we feel beat down it is SO NICE to feel such relief. One kid down, one to go.
P.S. Less than 3 months till Deeds gets his service dog!
I am so thrilled to have gotten to know some of the families that have dogs already from 4 Paws for Ability. This story was shared yesterday and I got the mother’s permission to pass it along:
Last week we had Stu in Kallie’s classroom working with the teachers and he just would NOT listen to ANYTHING. He kept breaking commands and going over to a little boy named Sam and very excitedly sniffing him. In my head I kept hearing the 4 Paws trainer saying “when he does that I would go ahead and tell him GOOD BOY.”
Kallie’s teacher started to correct Stu, but I stopped her and explained that 4 Paws trainers told us to watch for that and that’s how Stu detected seizures. When he broke commands to go to any of the kids that have seizures and smells them like that she should give him LOTS of praise. There are 3 kids in the class that have epilepsy that I know of, and Sam is one of them. I think she thought I was just trying to explain away the fact that Stu wasn’t listening to me because she gave me “that look” anyway… about a half hour passed and me and Stu left. Sam didn’t have a seizure while I was there so I told the teacher to watch him closely because I had NEVER seen Stu act that way, and that he usually always follows commands very well. I got the look again.
Well, today when I went to get Kallie, the teacher said “I could NOT believe it but about 10 minutes after you left Sam had a seizure”! Woohoo way to go Stuart!! he sure made believers out of THEM!
Deeds Jumping for Joy
We were so happy to hear that great story since Deeds dog will also be trained for the seizures as well. His are infrequent but anyone who has been around seizure activity knows how terrifying it can be. Before the seizure the dog can help prevent injury by alerting us and we can put Deeds in a safe position before the seizure starts.
Deeds decided he needed to jump off the stairs a lot so I took a few pictures. I love my crazy kid. The last shot is one he took of Gwen and I. Isn’t it lovely?
The contract and information for the service dog came in the mail today! It took Jeremy and I two hours to read through everything. It might have been quicker if I didn’t keep stopping to cry because I was so emotional and excited for what this journey means for Deeds.
We have signed it already and dropped it back in the mail which means it is time for us to raise the money for 4 Paws for Ability. The dogs cost $22,000 to train and we are making a commitment to raise $13,000 for 4 Paws to aid in their programs and mission to place service dogs with people who have disabilities. We have set up a page at FirstGiving for JD to start raising funds and we will be planning other fundraisers so stay tuned. Many of you have asked how to help and I’m sure I’ll be taking you all up on the offers now that we are at this stage of the process.
We love you all, and are excited to share this adventure with you. Thank you so much for your love and support!
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.