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.

Low Iron= Trip to ICU

Well Tuesday May 24th started out like any regular day. I had a wic appointment at 8:45am so I got up got the kids ready,a nd took my husband from work. We got to the wic office about 30 minutes early so I went head and signed in hoping we could get done earlier. The office was pretty empty,a nd not to long after I signed in they called us back to weigh and measure Jade and Riley,a nd to also get Rileys iron checked. The nurse asked me if I have had him checked out because he was really pale. I said no because he is always pale. She went ahead and checked his iron, I was maybe 5 steps out the door when she called me back in. His iron wasn't just low it was super low at about 4.2. I started freaking out. I knew that was bad, but I had no idea how bad or what exatly it meant. What was going to happen. She called the suporvisor and she called Riley's pediatricans office. After she got in contact with the pediatricain she told me they want him there right away to call back,a nd set up another appointment on a different day. I got the kids in the truck and booked it on over. The whole time I was balling my eyes out.

I arrive there, still crying of course, the nurse at the window told me they want me to come right back. I don't have a cell phone so I had not called my husband yet to tell him what was going on. The nurse told me if it was that low that we would probably be going to the hospital which just freaked me out even more. I called James at work to tell him what was going on, and he said he would find a way to the hospital(we only have 1 vehicle), but to call him back and let him know if we were going for sure. I told him I would, and went back to the room. The nurse took some measurements and weighed him again. She also took his blood pressure. The doctor came back asked me a few questions,a nd then told me that we weren't going to be going to our local hospital, but to the children's hospital in Charlotte to the ICU. She then told me that she had to call them back to let them know I was coming which seemed like it took forever. Once everything was settled I called my husband to let him know that I was on the way to get him because we had to take him to Charlotte.

I arrived at his work,a nd he was already outside waiting. We swapped so that he was driving, and off we went. We got there about 30 minutes later, and they were waiting on us. When I got there I called my mom to see if she could come up from Myrtle Beach to watch our oldest daughter Jade. There was alot of information given while we were there. I cannot remember it all to be honest. I know they said they were going to be giving him a blood transfusion which is why we were in the ICU. They wanted him in the ICU just so that if he had any adverse reations to getting the blood he would be in the right place for it. They also said they were going to give it to him over a 4 hour period. I know I spoke witht he hemotologist,a nd she said when they measured his blood there it was at a 4.8 and it was supposed to be between a 10 and 13. They gave me some other numbers too, but they basically said that it was due to his diet. Since Riley is such a picky eater he wasn't getting enough iron. We didn't notice any changes because this happened over a period of time. Riley has always been pale so I never though anything of how pale he was. I figured he was just a pale person.

Riley got his first transfusion, and everything went well. While he was getting his transfustion my mom arrived and stayed for a bit. I filled her in on what was happening. A little bit later she took Jade and went to my house. A little while later they told us he would be getting another transfustion in 6 hours that would last for another 4 hours. The hemotologist said that it was ok for him to be moved to a regular room so they had one waiting for us. They had to have the main doctors ok before they could move us to a regular room. The dotor came by at about 10:30pm to give us the ok, and we finally got moved to the room at about Midnight. We were exhausted.  At 2am it was time to start the next transfustion.

The next transfusion started and we were all sleeping. It was exausting. I was tired. Riley was fed up with people messing with him, and you never get any sleep in a hospital when someone is contantly coming in to change the iv bag or to take vitals. We all slept through most of the second transfustion. They had told us after the 2nd transfusion they would be taking blood to check his levels. They came in at about 8am to take his blood. They had to stick him to take the blodd because for some reason that is still unknon to me they couldn't do it from his iv. The nurse poke him in his hand and kind of poked areound for a bit. Then when that didn't work she went for his arm. She poked him in his arm and all I could see was wehre she was shoving the needle around like she had no idea what she was doing, but was kinda hoping she would get lucky and find the vein. This made me so mad I had to walk out of the room before I said something I regreted. Riley stayed int he room with the 2 nurses whild James held him. I came back later,a nd they had gotten the blood they needed after having to poke him another time. The nurse later told me that they had so much trouble getting the iv in because his blood volume was low. This sturck me as they thought I was stupid so someone plese correct me if I am wrong. Having low iron shoudn't have anything to do with having a low blood volume, and even if it does he had just finished getting a transfusion so it shouldn't have been low anyways. I think she was full of it, and just coming up with some excuse.

The hemotologist came in a bit later, and said that his iron levels were up to 6.8. She told me that there was still part of the unit of blood left so they were going to give him that too which should take about another 2 hours, and then after that they were going to give him some iv iron which would take an hour. After the iv iron they would do blood work, and then about an hour after the blood work we should get to go home. She also told me that she was going to prescribe an iron supplement that I need to give him by mouth 2 times a say. She said it doesn't taste that great so I might have to think of some crative ways to give it to him. She also siad that until his levels get back up to where they are supposed to be and they get built back up that I would probably have to bring him in once a wekk for iv iron. She said that the second time they give him the iv iron it wouldn't take an hour it would only be 30 minutes. The first time they give him the iron they wanted to give it to him slower so that they could make sure he didn't have any adverse reactions to it. Riley got his 3 transfusion, and then the iron. Everything went fine. Then they came back in to get blood. The nurse poked his hand first, and of course couldn't find the vein which was just making me mad all over again, and I think they could tell bec ause she called to have a nurse named Deb come in and put it in to draw the blood. Deb had it in and ready to go in under a minute. That's what I am talking about. Of course the other nurse was trying to say she was having troubles because of his low blood. Anyways they took the samples a little bit later the student nurse came in to check vitals, She was a really sweet lady. She said she would find out when we would getting discharged. She came back and told us within the hour. About an hour later we got to leave yippie.

As of right now Riley's diet needs to change to include more iron which is challenging because of the sensory issues he has. Also he is going to be getting the iron supplement, and then I meet with the hemotologist on Tuesday to get the iv iron for him. I have to take Riley to speech therapy tomorrow. I had to cancel the play therapy that was for today, and that might be getting reschedueled for Friday, and then I also have his new speech therapist that is going to be coming out to the house this Friday as well. Also while we were in the hospital the occupational therapist called as well so I will be having to call them back tomorrow as well. All of this plus his birthday coming up on the 17th which we are going to be having in Myrtle Beach. My days are running together. I know it will get easier with time, but it just seems like alot right now. Really I am just happy that Riley is ok, and he is going to be fine.

Riley is happy to be home, and has been playing with his toys. I am going to post some before and after photos of Rileys skin tone to see if you can tell a difference as to if he is less pale.

Here is the before picture. This was taken on May 22nd.

These are photos that were taken today when we got home from the hospital.

Play Therapy! Yay!!!

I got a call yesterday(5-17-2011) that they were going to start Riley on his play therapy. She asked if Wednesdays at 2:30 would be a good time, and it works perfectly! So she said that Jamie would be getting in contact with me to see if this Wednesday(today) would be good, or she might be able to come out the following week. I got a call later in the day from Jamie, and she would make it out this week. Woo hoo! I was so excited to get the ball rolling on these therapies.

Jamie came out today at 2:30 with her reusable walmart bag full of toys. As soon as she walked in Riley had interest in the car toys she had with the ramp. He played with the cars for about 5 minutes while Jamie and I talked for a bit. I really like Jamie. She has a daughter who is a little bit older than Riley, and she is also crafty just like me! Soon Riley caught eye of the led light toy that Jade had found. He thought that was funny. 

Next up was a piggy bank. This piggy bank was what caught his attention. He sat there for about 30 minutes or better playing with this piggy bank. Jamie would turn the piggy bank so that it was more difficult for Riley to put the coins in to try and get him to figure out how to do it. Riley seems to do very well with his right hand, but he just didn't get the hang of putting those coins in with his left hand when she had the slot on the bank vertically. He really did like that bank though. He would put them in, and take them out. He looked that little piggy over to try and figure him out. I think I might be getting him one for his birthday next month.

After the piggy came bubbles. He wasn't too sure about them at first. He thought they were funny, but he didn't want to touch them. After seeing Jade run around after them, and a little coaxing though he was in the chase. He got so excited over those bubbles. Jumping up and down and flapping his arms.

Another thing that I liked about Jamie was she was using signs to help communicate with him. She used the "more" sign sseveral times, and tried to get him to do it too, but Riley doesn't like hand over hand ( here they will take their hands and try to get him to make the sign). Another one that she did was "all done."

Jamie had brought several other toys with her too including some nesting cubes which Riley played with breifly, but he was just more interested in that piggy bank.

Overall I am very pleased, and look forward to next weeks vist. I am sure both Riley and Jade are ready for next week too. I tis so nice to be able to get Riley the therapy he needs without having to leave my home.

April 26, 2011

I got an email from Pam from the CDSA today. Here is what is said:

Hey, Deana,

Enjoyed meeting you yesterday and look forward to working with you. I have sent the pediatrician a service order that she needs to sign so I can set up the rest of Riley’s services.

Emily Huss will be contracting you to set up his occupational therapy assessment and services. Emily has a lot of interest and experience in working with toddlers who have sensory issues. She can also help with some oral/motor needs related to his feeding concerns.

You’ll be contacted by Michele Stewart with Special Kare for Special Kids (SKSK) to set up his CBRS – “play therapy”.

I’m still working on the speech therapy but should have that worked out today. I sent a fax to Compleat Rehab asking for his speech evaluation and progress notes – hopefully that will put speech on the “fast track” since that shouldn’t have to be done again (hopefully!).

Feel free to contact me any time. Look forward to working with you and Riley.

Pat

I am glad to see things are getting underway fairly quickly. I have added a copy of the report from the CDSA below too.