Ryan's March '10 Blog

March 7, 2010 - Ryan got his braces for his ankles and he's done pretty well in them.  He wears them about 2 hours a day and we make him stand as much of that as possible.  There is a picture of what they look like if you click the link.  We haven't had time to get him back to the pool yet but plan on it next weekend.  He was a stinker this weekend - woke up at 3:45 a.m. on Saturday morning.  We got up with him about 4:30.  He was down by 7:30 (only let him sleep an hour) and then only took a 45 minute nap in the afternoon.  Grandpa Eric came up early to help Mom since Dad had to work.  Grandma Pam came up later and then Great Grandma & Great Granddad came over later in the afternoon so he was in heaven with attention.  We had hoped Ryan would sleep in today but nope he was up at 5:30 this morning.  Mom & Dad are tired today.  He took a 3 hour nap today and Mom & Dad laid down for about an hour and a half of that, which has helped.  This week we expect to start a listening therapy program.  It is 12 weeks and there is a CD that he'll listen to 2 times a day.  After 2 weeks we get a new CD.  We'll see if we see any changes from that.  Feeding is slowly getting better.  We had a week of him refusing to eat fruit but that has been better lately.  Feeding therapy has been pretty stagnate lately.  The other therapies continue to plug along. 

Mom is 30 weeks now - only 9 weeks left!  Still lots to get done but trying to take it easy as much as she can.  Her belly is getting big but so far only about 15 lbs have been put on (nice when you are already overweight - not as much weight to gain).  Hope to get a picture and post that soon.  While Grandpa was up yesterday him and Dad got the border up in Megan's room and it looks very cute. 

March 15, 2010 - Just a quick update on Mom & Megan.  Nothing new to report on Ryan.  Last Sunday the 7th Mom thought Megan was trying to come out as she was moving rather close to the opening and it worried Mom.  Mom spent the rest of Sunday and Monday staying off her feet and since then all has been ok.  Mom had Stephanie scan her last week just to make sure all looked ok and it did.  Megan was head down and behaving.  Stephanie took measurements and Megan is tracking dead on for her due date and estimated to weigh about 3 1/2 lbs right now.  Mom had a doctor's appointment on Friday and she was happy with Mom getting off her feet and checked Mom and thought all looked ok.  At Mom's next appointment they will do a size/growth ultrasound and the doctor is hoping Megan will be well into the 4 lb range.  Mom finally got a picture of her and her belly plus there are new ultrasound pics.

March 24, 2010 - We have had quite the two weeks.  We've been busy getting home exercise programs updated and doctor paperwork filled out to re-qualify for Medicaid and PCS (which provides the caretaker).  We had an issue with our OT in that he refused to give us a written home exercise program because he said it was a liability.  It is actually part of his job.  Mom was so angry after her discussion with him that it caused her to have contractions last Tuesday night.  They were not that strong and pretty sporadic and stopped after a couple hours.  Neither Mom or Dad were happy about what had happened and decided until Mom delivers it might be best that she not interact with the OT.  Going forward Dad will work with him or we'll replace him if he continues to be difficult.  We have no issues with any of our other therapists giving us home exercise programs or working with us and the caretaker to make sure we're doing them right.  Very frustrating.  We've also had quite a few frustrations with our caretaker since she has come back from her 3 week break.  We haven't been sure she is working Ryan as hard as she should or doing all the exercises she is suppose to be doing.  Mom even caught her (by checking our webcam) watching non-Ryan programming on TV for 5 hours one day.  We told her only non-Ryan programming when he is napping.  Needless to say she was talked to and swore it would not happen again but the next 2 days she was caught with headphones in while working with Ryan, which was worse to Mom than the TV.  We called the agency and complained and she got another talking too.  This week she has been working much harder but we are in the process of looking at other potential caretakers to replace her.  We will be interviewing one on Friday and hopefully if we like this person we can try her out next week while the current caretaker is on vacation.   

Today we had our meeting with Medicaid for the PCS review.  They have tried to standardize how they award hours and it is totally different than last year.  No longer will they look at all of our therapies.  They will only look at them if there is a medical need for them.  Based on our review only feeding therapy and physical therapy will be looked at and because of Ryan's age and the assistance a normal 2-3 year needs we will be losing a significant amount of hours.  (As he gets older and isn't able to do things like dress himself or do certain things we'll get more time but until about age 5 we aren't going to get many hours.)  We currently get 45 hours a week and we're expecting it to go down to 10 to maybe 20 hours effective end of April.  Part of it stinks because we are not sure what we are going to do but the other part is relief in that with the frustrations we've had we're ready for something different.  So by next week we should know what our hours will be cut to and then we have to work on what to do.  We don't know if it is really worth having someone come 2 hours a day 5 days a week if we have to have another caretaker come in.  Once Megan arrives and Mom is able to pick Ryan up and do more Mom may be able to pick up what we need until she goes back to work.  Once Ryan goes  to preschool we may only need someone to come help us a few hours a day after he gets home if we adjust Mom and Dad's schedule.  The big thing is really getting to the end of August.  It is going to be interesting to see what happens.

Today we also had a meeting with the elementary school where he is slated to go.  We will be having another one on April 9th where some of the therapists and both teachers will come out and meet Ryan to get to know him and see his needs.  We will have another one on April 27th at the school with all teachers, therapists, administrators to go over his goals and finalize the process.  Mom really hopes we have all of this finalized by the time she delivers.

Some cute things on Ryan.  His new word is purple.  It is very cute to hear.  Grandpa or as he says papa is a newer word that is also very cute to hear.  Also the other night during his bath he was putting his face in the water, which he has not done before.  Now we need to work on blowing bubbles.  Also when there is a toy out in front of him, when he is on the floor on his belly, that he is motivated to get he is scooting towards it so we're getting closer on army crawling.  We've also been working with him to walk when someone is holding him under his armpits or by his fingers.  We do it when his braces are on and when they are off.  He's getting the idea of it but if you were to let him go he'd just crumble so we still have a ways to go there.

We started listening therapy last week and he has done well with it so far.  Not sure if we're seeing any improvements or not but we feel he is being more of a chatter box.  We did weigh him and he is coming in at about 32.4 lbs. so he continues to gain weight.  On nice days we've been getting out for walks and he has done really well with that.  And last but not least he is now sleeping in his toddler bed.  We decided it was time to try it even though developmentally he is not there.  We have the toddler rail up and the first two nights he cried himself to sleep but has done well since then.  Didn't think it would bother him but it apparently did.