After trick or treating, we head back to the house and finish packing (I do, while he watches his bot). We got a much later start than I had planned, but that's life in our family. We made a pit stop overnight and headed out this next morning around 8am (the drive to Dr. Sprouses office was 4 hours and 15 minutes away) his appointment was scheduled for 1pm. I am praying Please let us make it on time without kicking, screaming and hitting. He didn't, not a single time. Instead he asked every 30-45 min "mommy where we going". I told him we were going to see Dr. Sprouse. "I no like doctors...hmph" so the next time he asked I told him I was going to see my friend (which wasn't a lie) "me go see your friend too mommy, me go, me go" We arrived to Dr. Sprouse's office at 12:50pm and by the time I got him to agree to leave his firetruck in the van and get inside her office it was 12:55pm, early for a change!
Let me first say how AMAZING Dr. Sprouse is with our kids. Those parents with chromosomal abnormalities. The first day we started testing at 1pm. While in the room Dacotah would stub up and not want to do what was asked, and she would very directly tell him "okay whenever you are ready we will keep going", when he needs a break, she'll let him run up and down the hallways, she'll let him have hugs from mommy and he gets back on tract. At 3pm he had had enough so we left to go visit mommy's friend Victoria for the night.
I first met Victoria through couchsurfing, she is an RN who comes down from Severn MD to work the local RAM clinic each year. We connected great during her last visit in and we stayed up talking way tooo late lol. Dacotah was screaming he wanted ice cream, and the container I had brought with us melted, despite my best attempt of keeping it frozen, so we took off to the store to find his dairy free ice cream. Victoria and I had dinner, a very good, better than you could buy out of the restaurant kind of dinner. Salmon belly, with broccolini, and fermented veggies. I am not lying when I say it's delicious.
A few weeks back I bought Dacotah a lightening McQueen camping cot there were two reasons, one was to get him to sleep in his own bed, one was to get him out of my bedroom altogether at night. It is lightweight and portable and has just enough give that it gives him a secure hugging feeling. He went to sleep beside my bed that night and slept, he would startle awake and I'd put a reassuring hand on him and he would go back to sleep. At 5am he was up and ready to be in my bed, but we had made it 8 hours with him in his bed first!!!
We got up again around 730, and I asked him if he wanted to head back after the appointment or if he wanted to stay there again Friday night. he said "me go home". So I packed our stuff back out to the van, and we headed back to Dr. Sprouse's office. We test another two hours around this time it's 11am and Dacotah is done having anything to do with anyone, so they suggest we go for a walk and come back in 15 minutes. So Dacotah and I walk around the entire building, running, jumping, climbing steps, and head back in. We finish all the testing around 1pm and by this point he is saying me go bye bye every few minutes. So we move over to the big room with the toys so Dr. Sprouse and I can talk.
Dacotah is doing great cognitively. The anxiety, sensory issues, and his speech are a huge concern at this point. She gives him an autism diagnosis so we can continue getting his services and find out what else is going on. At this point we aren't sure which problem is primary vs comorbid vs a standalone. We are going to do a Chromosonal Microarray Analysis Test. We attempted it last year but didn't get enough spit on the swab so the DNA strand cracked during the test :( She also suggested we go see an ENT to check for a cleft palate, I can't see a hole with my eyes, but they can see if there's a pin hole that's causing his speech to still be so far behind. I'll get that set up soon. I'm not 100% sure if they can do that with him awake or if we need to find someone at Niswongers to check and correct it under sedation if he has it. Dr. Sprouse will get in touch with his therapist and formulate a game plan to help with the speech. At this point we aren't as worried with the PT and OT they are secondary concerns.
We discussed his sleep issues and I told her we were training Loki to be his service dog. She backed that up 150% saying that was a great idea. She said "why don't you start letting Loki sleep with you both at night, then as you move Dacotah into his room, he still has Loki there for his support at night. (this works great because Loki can always be right there even when traveling). So we are going to start working on that this week.
We discussed how Travis and I separating didn't seem to have an impact on him because he still sees us both every day and there's not fighting or arguing between us. (I'll add this to a different post with more detail tomorrow). So we'll get Loki use to both places and proceed forward.
We are going to put potty training on the back burner in the meantime and work solely on getting him out of my room first. I'm hoping we get approved for a grant so I can set up a security system that will alert me if he opens the door to his room without some BLARING loud alarm scaring us both to death in the middle of the night. :)
We go back to see Dr. Sprouse again in July 2019 and we will continue to see her yearly and make changes as needed after each visit. This lady gives me encouragement, hope, and helps me know that yes it is a long road, but I am not alone. Thanks Dr. Sprouse, thanks NDC for your research and support to help our kids.
The drive home hmmm. I had planned on making it half way. Dacotah wanted McDonalds, and well guess what out of all the McDonald's this one had an indoor playground.... lol fast forward 45 minutes and we were on the road. By the mapquest calculations we would bypass rush hour. Stupid me forgot that I didn't just need to worry about DC traffic, but Richmond, and school letting out. LOL we made it to Staunton VA and between it being dark, raining, traffic going less than 50 in a 70mph zone, I was done. We found a hotel off of 81 and crashed for the night.
Dacotah did such a great job with 3 days of traveling 4+ hours each day and yesterday was no different. He would just say "it's late me go mommy's house". We made it back to Abingdon and we went on down to get him a hamster and all the fittings for his new home. Dacotah was so excited (he'd been watching Ryan's Toy Review and hamsters on youtube for weeks now and would ask "me get one") So his dad and I agreed we would split the cost and he could take him back and forth with him along with Loki. We made it home around 3pm yesterday. I feel like a weight has been lifted off and I'm not searching for answers. I know. I'm not wondering when this journey will end, because it won't. But it will get easier.
Sunday, November 4, 2018
The good, the bad, and the normal
I wish every post could be uplifting and optimistic, but I'd be lying if I didn't say there are some days I want to throw my hands up and say I'm done, someone else needs to take over. Then there comes along a rewarding breakthrough day that gets me over the feeling sorry for myself that makes me excited to see what Dacotah does in the future. So with that being said:
School, Dacotah is doing great. He still has a lot of separation anxiety when we drop him off in the mornings, but greets us with the worlds biggest smile at pickup time, followed by "when is sissy coming home". He doesn't tell me about his day, but his therapist reach out and let me know what they are working on so we can keep working with him on the weekends and when school is out. As a mom with my focus being on him when I see his facebook pictures at school, I notice the small things, that he is sitting just outside of the group, that he is listening to the teacher, or that he never looks at the camera when they try to take his picture. These are little things. The big thing is he is learning. He gets very frustrated when he can't get the words out.
Halloween: Dacotah wanted to be batman, so we got him a $15 costume from Walmart that had a face mask, well as you can imagine the face mask last 2 seconds. Literally long enough to snap a quick photo! Big sister was a kitty cat and was super excited because this year she would get to meet up with a friend instead of only going to a few houses. We went to our regular places and by the 4th stop of the night, Dacotah says "it's late me go mommy's house". I told him we needed to make one more stop to the trunk or treat at our home church. (I still call it our home church even though we have barely gone since he was born, the constant worry of his allergies and him melting down, prevents me from feeling okay with "dumping" him off on the nursery worker.) So we get there and are greeted awesome with always "How are you all and how's Dacotah". Dacotah shys away but does wave hi, Montana runs off to visit her friends from her old school. As we are standing there Dacotah notices Mr. Rocky and the popcorn machine. He says "me watch that". So Rocky loads up the popcorn machine and Dacotah stands mesmerized by it for the next 30 minutes. He rarely looks up and it's just long enough to make sure that I'm watching it too. Linda says "My he sure is growing, and with tears in my eyes and my heart breaking "yeah he sure is, but it's heartbreaking that my soon to be 5 year old would rather be watching this vs trick-or-treating"". Everyone tells me he will get there and he is making progress for sure. After he has his fill of watching the machine, he says he is ready to go bye bye and takes off toward the van.
We continue to meetup with Montana's friend B and her family. Make a quick pitstop by my friends house to see them dressed up like mustard and ketchup. Dacotah sees the fire hall is open, so we stop by to see our local firemen and their big trucks. They see Dacotah and tell me to take him in to look at the trucks, and for the next half hour, Dacotah smiles ear to ear, racing from one truck to the other, back to another, ringing the bells and having a blast. Thanks Big Stone Fire Department he had a blast!
So we leave from there to grab some food so I can get us ready for our trip to go see Dr. Sprouse in Maryland. It's just Dacotah and me this time. His dad is in training in Roanoke for his new job. To say I am dreading this drive alone, would be an understatement.
School, Dacotah is doing great. He still has a lot of separation anxiety when we drop him off in the mornings, but greets us with the worlds biggest smile at pickup time, followed by "when is sissy coming home". He doesn't tell me about his day, but his therapist reach out and let me know what they are working on so we can keep working with him on the weekends and when school is out. As a mom with my focus being on him when I see his facebook pictures at school, I notice the small things, that he is sitting just outside of the group, that he is listening to the teacher, or that he never looks at the camera when they try to take his picture. These are little things. The big thing is he is learning. He gets very frustrated when he can't get the words out.
Halloween: Dacotah wanted to be batman, so we got him a $15 costume from Walmart that had a face mask, well as you can imagine the face mask last 2 seconds. Literally long enough to snap a quick photo! Big sister was a kitty cat and was super excited because this year she would get to meet up with a friend instead of only going to a few houses. We went to our regular places and by the 4th stop of the night, Dacotah says "it's late me go mommy's house". I told him we needed to make one more stop to the trunk or treat at our home church. (I still call it our home church even though we have barely gone since he was born, the constant worry of his allergies and him melting down, prevents me from feeling okay with "dumping" him off on the nursery worker.) So we get there and are greeted awesome with always "How are you all and how's Dacotah". Dacotah shys away but does wave hi, Montana runs off to visit her friends from her old school. As we are standing there Dacotah notices Mr. Rocky and the popcorn machine. He says "me watch that". So Rocky loads up the popcorn machine and Dacotah stands mesmerized by it for the next 30 minutes. He rarely looks up and it's just long enough to make sure that I'm watching it too. Linda says "My he sure is growing, and with tears in my eyes and my heart breaking "yeah he sure is, but it's heartbreaking that my soon to be 5 year old would rather be watching this vs trick-or-treating"". Everyone tells me he will get there and he is making progress for sure. After he has his fill of watching the machine, he says he is ready to go bye bye and takes off toward the van.
We continue to meetup with Montana's friend B and her family. Make a quick pitstop by my friends house to see them dressed up like mustard and ketchup. Dacotah sees the fire hall is open, so we stop by to see our local firemen and their big trucks. They see Dacotah and tell me to take him in to look at the trucks, and for the next half hour, Dacotah smiles ear to ear, racing from one truck to the other, back to another, ringing the bells and having a blast. Thanks Big Stone Fire Department he had a blast!
So we leave from there to grab some food so I can get us ready for our trip to go see Dr. Sprouse in Maryland. It's just Dacotah and me this time. His dad is in training in Roanoke for his new job. To say I am dreading this drive alone, would be an understatement.
Subscribe to:
Posts (Atom)