Neurologist and Updates

It has been a while since my last post on here so here is an update. Riley is still in speech, play and occupational therapies. He is doing very well, and learning new words all the time now. His most recent word he learned is sit which sound like s&!@ when he says it. I cannot remember if I updated you on his sppech therapist having her baby early or not, but she has been out on maternity leave since August. Riley has been working with Sara while Lori has been out on her maternity leave. Sara has Riley using picture card to tell her what he wants not. I am not sure if he really gets that what is on the card is what he gets, but he knows if he hands her a card he will get something in return.

The 1st week of October was the Walk now for Autism Speaks Carolinas event. Rileys play therapist, Jamie, came out with her daughter to walk with us. It was amazing how many people showed up.

Riley's Occupational theripist was also out on maternity leave. She recently came back for about a month, and realized she needed more time with her little one. So now we are switched back again. Atleast we are getting back someone he has already worked with. He is making improvements now, and will even walk in and touch the grass without it affecting him.

So Riley had an appointment with the neurologist today for his MRI that he had way back in June. The last thing they told me was that everything looked fine, and she was just going to have the pediatric neurologist look over his MRI to double check. I never heard back from her so I assumed everything was fine. So I get paperwork in the mail last month for this new appointment that he had today. W...hen I got the papaerwork I called and asked what the appointment was for, and all they could tell me was a sacral lumbar anomole (Which I googled, and coundn't find anything helpful). I take him to his appointment today, and they tell me he has a cyst at the bottom of his spine by his spinal cord, and they don't know what it is for sure weather it is good or bad so I have to take him next friday for another MRI to see if there are any changes since his last MRI. Then I have to wait until December 31th to find out the results. Why didn't they tell be about this months ago?

 

We also have had halloween since I last talked to you. Riley was a lion this year. He didn't quite get what was going on, but he had a good time. We went into to town for the Tick or Treat around the town. They had a bulldozer parked in the middle of the road which Riley was amazed with, and had to thourouly inspect before we could continue on collecting candy. They also had a hay ride which he enjoyed as well. I forgot to mentoin we are also going to be moving in about a month. We got a house in town which will put us a block away from the elementary school Jade will be going to next year, and we are also walking distance from a play ground. I think it will be good for us because it has more space so Riley's therapist will be able to work more one on one with him with out Jade interfering. They hay ride we went on took us right past our new house too. Anyways that's all for now.  Enjoy the other photos down here at the bottom.

 

 

Good News and Updates

Well got a call from Riley's hemotologist today. The iron tests have came back wonderful yet again so there is no need to have him on the iron anymore, and also I won't have to take him into Charlotte once a month to get blood drawn anymore!

Therapies have been going well. Speech is coming out on Wednesday's and Fridays now because his regular therapist had to have her baby early. I am hoping all is well with her because she wasn't due until the end of October. Play therapy is wonderful. Jamie is the best! Jamie even signed up to walk with me in October for the Autism Speaks walk. OT is going well too. Just recently got switched over to another therapist becuase the other one works in the school system, and with school starting back she had to go back. The new therapist Lynne is great. She suggested doing brushing and joint compressions for him. Here is a link that explains it a little better http://www.slc.sevier.org/sibrush.htm. She has lots of ideas, and I like how she always brings something new every week, and even brings things for Jade to do as well.

This weekend coming up we are going to a Birthday/pool party. It is going to be outdoors, and then we are camping afterwards. Not sure how well Riley is going to handle it. He has gotten used to the grass a little bit more, but I am pretty sure the pool is going to be a no go.

I also wanted to share this video. My cousin posted this on facebook, and it really does explain what it is like to have  a child with autism.

Diagnosis Day

I know it has been sometime since I have last updated everyone. Riley had his evaluation today for Autism. Pat and another lady came out today for the evaluation. Riley was in a great mood, and did alot of the tasks very well. He has definitley made improvements. Although he has made improvements which is wonderful he still shows all the clasic sympoms of autism, and we finally got a diagnosis. Riley has autism. I knew this day was coming, and in my heart that he did indeed have autism. Now that I have a diagnosis I can move forawrd and get him into the TEACH program which works specifically with children with autism. The evaluator also mentioned I might be able to get Riley SSI benefits because of how he scored on his testing. The SSI would help so that I can afford to put him inthe TEACH program since it is no longer free.

On another note we got Riley to walk in the grass yesterday. I was so proud of him!

Put off plans...

Well this week ended up not being as busy as it was supposed to be. I had the nurologist call on Monday, and they rescheduled Rileys appointment for August 2nd because the doctor is having surgery, and will be on medical leave. Also Jamie (Riley's Play Therapist) is on vacation in North Myrtle Beach. It's weird to acctually know people who vacation where I grew up. I mean I know people vacation there, but I never thought it would be someone I know lol. So that knocked off 2 appointments for this week. Then I am talking with Pat through an email yesterday, and found out that Emily (Riley's Occupational Therapist) had her baby 6 weeks early. I get a call this morning saying they do have someone who is coming in, but they weren't prepared for this, and I mean who would be, so as of right now the appointment for today is cancelled unless the person covoring for Emily feels like coming out today. By the way they said the baby and mother are fine, but the baby is in the NICU because of how early she is. I know it is not Emily's or the baby's fault, and there is nothing that could have been done to change it, but I am a little disapointed that she won't be coming out for quite some time now because she was the specialist in the sensory area of OT. Riley had his evaluation, but she had not really worked with him yet. I was hoping that she could have worked with him a bit before she had her baby so that she could get a plan of action down on what to do with him while she was out. You cannot change the past though so we will just move on with the present and take it as it comes. I am sure it will all work out in the end. So the only thing left for the week is going to be Rileys IV iron tomorrow morning.

Riley had his 2 year check up on Monday. The doctor said everything looked fine, and I am doing everything I need to be. I asked about the MRI since I won't have an appointment with the nurologist until august now,a nd she has said that if it were abnormal I would have gotten a phone call by now, but she would check into it,a nd call me. I still haven't gotten a call. They did give me the develpoment check list for me to fill out before the appoinment. I thought that was a waste of time just for the fact that I know he isn't on track with his develpoment, and I am already taking the measure that I need to take to try and get him on track. I am thinking of changing pediatricans offices. I feel like this one doesn't even try to remember who you are, or what is going on with your child. I mean the 1st time I took Riley there she came in and said "She's so cute" or something along those lines. The first thing I thought was did she even look at HIS records, because if she had she would have known that Riley is a boy, and not a girl! Not only that they totally missed his iron being low. Didn't even question why he was so pale. When I went to the WIC office the 1st thing the nurse asked me is why he was so pale. She knew, but the doctor at the pediatricans didn't? Not only that when I first expressed my concerns for autism the pediatrician treated me like I didn't know what I was talking about. At this point I am debating it justbecuase if I go to another office and I going to get the same thing? Doctors who just read the charts, and don't really try to get to know their patients. Is the pediatrican's office that he is at now going to start to take notice, and get to know him a little better? Another thing they do at this office is some sort of electronic vision test. They never did this back at the beach, and I know it not just Riley because they did it to Jade too when we 1st went there. Back in March when I took Riley and Jade for the 1st time they did a vision test on both. Jade sat there and tookthe test, but Riley ripped the probes off of his head the minute they were on. They said no worries we will just do it at his 2 year check up. So while we were there they put the probes on. I am holding Riley in my lap and holding his arms down so he will leave the probes on while they try to get him to watch this tv with some extramly annoying music and random images. As we set there the probes keep falling off. I try to stick them back on, hold them on, and she even repalces the probes, and yet they keep falling off. Uhh I wanted it to just get done so he didn't have to do it AGAIN. So anyways I am supposed to take him back next month for a test I don't even see the signifigance in. I mean I am sure the results aren't really accurate because when you have probes falling off, and a kid that doesn't want to look at the TV with the annoying music coming from it.

Oh another thing that happened was we finally have Riley's speech therapy set up now. Lori will be coming out on Monday's and Wednesday's at 2:15. She gave me the option of doing one day for 45min to an hour or 2 days at 30 minutes each. I went with the 2 days just because I don't see Riley setting there for an hour. We will see how it goes I guess.

That's it for this post. I might update you all tomorrow after the hemotologist appoinment. See ya next time!

Happy Birthday Riley & Lots of appointments!

Just finished celebrating Riley's 2nd birthday this weekend. His birthday isn't until the 17th, but we went to Myrtle Beach to celebrate with friends and family. It was a joint birthday party with my best friend's daughter Sammy who is turning 4. So we has Thomas the train and Hello Kitty for the themes. We had a giant water slide, a little bounce house, and an inflatable bowling set. Riley had a good time even though he didn't want anything to do with the inflatables or the cake, he just wanted the Thomas off of it. He did like his gifts though :D

The birthday party was great, but now it's time to get back in the groove. Last week I had Riley's OT (occupational therapist) Emily come to the house. She said from what she seen that Riley shows signs of being able to make lots of improvement with his sensory issues. She also said that it has been proven him not liking things or people touching his hands is directly related to what he eats, and if we can improve on that then his eating will improve too. Also she said that Movement (like him being scared on a swing or being up high on a table) is directly realted to his speech so if we can improve on the movemement then his speech should improve. She also say alot of the times sensory problems are nurological. I already have Riley an appointment with a nurologist which I wasn't going to mention anything about until I was sure what was going on, but I guess it comes more into play now. Back in April I was changing Riley when I noticed a small patch of hair in the top of his butt crack. I googed it, and found info about a sacral dimple. I called the pediatrican, and took him the next day. At the visit she said it looked fine, but to be sure she set him up with a nurologist which I take him to on the 22nd, and also wanted him to get an MRI which is this Wednesday at 9am. For the MRI they will have to sedate him so that he doesn't move while they do it.

Anyways back to the OT. She said that it was good that I already had him an appointment with a nurologist. She said she would fax over the papers from our visit so that they would already have some background info on what is going on. So that was pretty much the 1st vistit just alot of questions for the most part. It is going to take 2 weeks for my insurance to get approved so we will start our wekly visits on Thurdays at 3pm starting not this week, but the week after.

This week is pretty simple. Riley has his MRI on Wednesday,and his play therapy later that day. Next week though I have his 2 year check up, the nurologist appointment, he has his hemotologist appointment to get his IViron, plus play therapy, OT, and hopefully speech too. On top of all of that Jade has a dentisits appointment too.

I think that is all for now. I am going to post a few more photos from the party, and I will be sure to update you when I get results from the MRI.

Good to go!

Riley had his appointment at the hemotologist's (blood doctor) this moring. They had taken his blood, and given him an IV of iron which they gave to him over a 30 minute period. The doctor told me his iron levers were doing well. They still aren't up to the range they should be ( between 10 and 13 for his age), but they are almost there. They were at 9.2 when we got there today. I asked her what they were when we left the hospital last week, and she told me they were at 9.5, but the machines are kind of like a bathroom scale. You can go to the doctors office and be one weight, and come home and have it be 3lbs different. So anyways I told the doctor that Rley is taking the liquid iron with no problems so the good news is we only have to come back once ever 3 weeks instead of every week to get him the IV iron! Also I asked about if the liquid iron would stain his teeth, and she said just to have him wash it down with some apple juice or water after he takes the iron.  That's all for now! I will keep you all posted as I know more :D

Update on Iron & Therapies

So it seems like while we were at the hospital everyone wanted to call. The new speech therapist that is coming out to the house called. I returned her call, and she came out Friday May 28th. She basically just got to know Riley, and asked a lot of questions. She said that she would be coming out on Mondays and Wednesdays I think is what she said maybe it was one day or the other. Anyways she said she would call me in about a week to let me know after she figures out the results of his evaluation.

Also while we were in the hospital the occupational therapist called. I returned her call, and she is going to be coming out for the 1st time on Thursday June 9th. I am really excited to get that one started so that maybe we can get Riley eating more things. We did get Riley to eat some Jello which he liked :D, and he also stole some of his sisters pop tart so hopefully we can get him eating some more things soon!

Also while we were in the hospital Riley had to miss a play therapy session. I called Jamie back once we got home, and she was able to come out on Thursday. I think RIley really enjoyed being able to just play, and being out of the hospital. Jamie is really good with him, and Jade likes her too. Jade even drew her a picture to take home with her.

As for his iron we go tomorrow to the hemotologist (the blood doctor) where they are going to test his iron,a nd probably give him a dose of IV iron. Riley has been taking his liquid iron without any problems! I give it to him 1st thing in the morning mixed with some orange juice, and then right before bed mix with some orange juice. I did hear the the liquid iron can stain teeth. I am going to ask the hemotologist about it tomorrow, and hopefully I can find away to clean his teeth after giving him the iron because he will not let me into his mouth at all. It is all I can do to try and sneak a piece of food in there, but I think that is something the occupation therapist wil have to work on with him.

So in the up coming weeks I have lots going on for him. I have his 2nd Birthday coming up on the 17th. It's hard to believe it's been almost 2 years. He also has his 2 year check up on the 20th, and he has a nurologist appointment on the 22nd.

That's it for now, but I will be sure to update you all tomorrow after we visit the hemotologist.