Ryan's June '09 Blog

June 7, 2009 - Not a lot to report this week.  Ryan has been doing well eating and we're trying hard to come up with a good menu for him with enough calories.  The big thing is in the last few day we're noticed he has bad breath.  Doing some research it could be many things - it could be he is having digestive issues or respiratory issues or fighting an infection or because he's somewhat of a mouth breather.  We wonder if it is just his body reacting to all the different foods he's eating - which would fall into digestive issues.  His teeth get brushed 1 to 2 times a day so we don't think it is because of that but we've stepped it up a bit to try to make sure we're keeping it clean.  So we continue to watch him closely.  The nurse comes Wednesday so we'll see what she says before we take him to the pediatrician.  We did something yesterday we have not done in a long time and have really needed to do - we had friends over for dinner with all their kids.  We had Kayla, Asher & Evan and their parents; Ethan & Emily and their parents; and Carter and his parents.  The kids seemed to have a great time playing together and of course Ryan could care less.  At one point Mom thought Ryan was laughing at something Evan (who is Ryan & Carter's age) was doing so Mom wanted to try to get them playing so she put Ryan by Evan and of course Ryan lost interest.  UGH!  Of course Ryan did love it when the adults gave him attention.  Mom & Dad really enjoyed seeing our friends and had a good time getting the parents to play Wii while the kids played hide & seek.  We really need to get an adult night planned soon!  Grandma Connie is coming today for a week to help us with Ryan while the Great Grandparents are on vacation. 

June 14, 2009 - Grandma Connie left today after being with us for a week.  She has had a good time hanging with Ryan and has been working him pretty good.  He has been eating well for her.  He is actually eating full jars of baby foods now.  A couple times this week he has eaten a full jar of one thing and a jar of meat.  We have been pleased.  He has still been doing the 1 nap a day but the times have varied.  Normally he'll go down anywhere from 11 to 1 and sleep two hours.   One day this past week he was down by 9:30 and slept 2 hours and then was up the rest of the day.  We had Grandma all lined up to get up with Ryan Saturday morning so Mom & Dad could sleep in.  Mom woke up around 6:30 so she got up to find he was still sleeping.  By quarter after  7 she woke Ryan up so we didn't get too far off on the day.  Today we let him sleep and he slept until 7:30 and then this afternoon he took a 3 hour nap and then was ready to go to bed before 8:30.  He does appear to be teething so don't know if that is it or if he is in a growth spurt or just tired from his week with Grandma.  This week at physical therapy she brought us some new toys to play with.  One is a type of walker - similar to what you buy infants but it doesn't have any toys - definitely looks like medical equipment.  It's wheels allow Ryan to use it on carpet and hard floors so we're excited to get him in this.  The other one is to work on putting weight on this legs and just stand.  We'll do each for short periods and work up to longer periods of time.  He complains getting in to both but has done good in both so far.  We are making progress but still not sitting up on his own.  A big thanks to Grandma Connie for all her help this last week.  We really appreciate it!

June 21, 2009 - This has been quite a week.  There is a program Ryan's qualifies for called PCS under Medicaid.  This allows a care provider to come in and stay & work with Ryan up to 24 hours a day to assist the family.  The whole point of the program is to keep the individual in the home and not in an institution.  It also was to help those who had to work have someone qualified care for the individual.  We filled out the initial paperwork that picked an agency to go through, then they had a nurse reviewer come out and do an assessment and then they sent in paperwork to Medicaid and then we waited for the final approval.  Usually there has been no issue but Medicaid, thanks to the economy, is being a pain in the butt.  The agency had Mom call Medicaid to see if she could get things rolling as we already had the care provider picked out and had been waiting a month with no response.  Found out the agency missed some paperwork or something so they had to send that in.  Then we've been waiting another two weeks so Mom started calling. 

The gal at Medicaid is very unfriendly and not helpful at all - almost to the point of being rude.  On the 10th she called Mom back to say we got our authorization and that once the agency received what they needed we could get started.  On Friday the 12th Mom got a call from the agency saying that we only got approval for 10 hours a week when we asked for 28.  Why did the Medicaid gal not tell Mom that on the 10th?  Probably because she didn't want to get yelled at.  So Mom called Medicaid and all the unfriendly gal would say is Ryan doesn't meet the medical necessity and they followed their guidelines.  Mom said she wanted a copy of their guidelines, which the gal said was on their website.  Mom got a copy and Ryan does too meet the medical necessity.  Per their guidelines medical necessity is a doctor fills out a form that says it is medically necessary for the individual to get the services.  Since Mom did not see the final papers that got sent in to Medicaid she couldn't get too upset with the gal so she called the agency and had them make her copies.  She went and got them and when she read through them she felt the papers were not filled out as complete as they should have been with some areas almost being confusing.  Mom was a little unhappy with the agency but believes they filled out the paperwork like they always do and always get their hours. 

The agency had adjusted some of the paperwork and refaxed to Medicaid so unfortunately Mom had to call Medicaid this past Monday to say do not look at as they are still not complete.  Again dealing with the unfriendly gal, who was as unfriendly as ever, this time the gal proceeded to tell Mom that the reason we only got the hours we did was because a normal 2 year old can't change his diapers or feed himself so they can't give us time for that as was requested on the week at a glance form (which details how the care provider will be spending their time.  This is one form Mom didn't think was filled out complete because there was only 30 minutes lined out for therapies when we need hours for multiple different therapies.)  Mom proceeded to tell the gal that Ryan is not a normal 2 year old - that he can't feed himself, he has oral aversion so you have to do exercises and a bunch of stuff to get him to eat.  Didn't matter to her.  She made some comment about him needing to have issues outside of a normal 2 year old or something.  Mom was like he has CP and that was on the forms.  The gal said she saw that and gave him 30 minutes for OT & PT.  It's like lady it doesn't work that way.  More time is needed to work with a kid with CP than 30 minutes a day.  Plus no where in their guidelines does it state that they will be comparing the individual to someone that is the same age who is normal.  We feel like it is age discrimination to do that.  The gal kept  saying you can appeal and Mom said dang right we'll appeal.    Mom asked that with this appeal she wouldn't have to deal with her anymore did she?  The gal said she would be at the hearing tell her side of the story.  Great.  The gal said that they have been authorizing PCS incorrectly and so now they are doing it correctly.  Mom asked why aren't they working with the agencies to make sure that they are filling  the forms out how they need to be instead of how they always have been filling them out.  The gal said there was an e-mail that was sent to the agencies but when Mom asked the agency later they didn't know anything about an e-mail. 

So now instead of working with their agencies so these can be approved on the first review, they are going to cause increased costs for appeals, some families are going to have to institutionalize their family member or people are going to have to quit their jobs because they can't afford a special needs care provider and some of those will have to go on welfare.  For us to find a care provider with the special needs qualifications we need we'll roughly be looking easily at 40K a year if not more, which we can't afford.  This will cause us to have to sell our house and Dad to stay home with Ryan since Mom is the breadwinner.  We are not the only ones in this boat and there are many families that are upset because their PCS hours have been cut.  Our service coordinator on Friday the 12th had 4 other calls from people with issues like ours.  There are a few of us that are contemplating taking this to the media.   

So where we are at now is an appeal.  Mom got the paperwork last week and will be sending it in this week.  She called an advocacy group that has lawyers to help with this stuff and she is to fax them a copy of this form.  She is waiting to fill it out until then to see how they would like her to proceed.  Then as far as we know we will need to get copies of all his evaluations and we have already had our pediatrician write a letter on why Ryan needs this service.  Then there will be a hearing and we'll go plead our case.  We will probably take him with us so we can show how he is and we'll have to see if we need to bring in other therapists/doctors to help us with make our case.  In our eyes, he is not making the kind of progress he should because it is us - his parents and great grandparents trying to get him to work.  Kids always work better for external people and we need to start making more progress.  He is going to be two with the development of a 6-9 month old with the medical conditions of cerebral palsy, hydrocephalus, BPD, & oral aversion to name a few.  One would think this alone would have been case enough but apparently not.

We did decide to go ahead and see if we could use the 10 hours a week we did get so we could get the care provider going and working with Ryan - to see if we would start seeing some better results.  We got her started this past Wednesday and this week was a getting used to week.  Hopefully starting this coming week she can really start working him and pushing him.  This whole deal has had us pretty upset - it is so draining to deal with this stuff.

Wednesday was Mom's birthday and it was filled with dealing with this PCS stuff, training the care provider and Ryan puking in Mom's hair.  The puking in Mom's hair was the icing on the cake and Mom had had enough so she didn't make it to her NICU meeting.  She got Dad to take her to dinner and she had a tall drink!  Friday Dad called Mom at work saying he wasn't feeling too well.  He came down with some bug and was in bed with a fever and aches all day.  Luckily we had the care provider that day so that helped greatly!  Ryan didn't like it that Dad stayed away from him all day - it was rough on both of them.

Ryan is teething again and two new teeth have poked through with one more to go.  Man we are so ready for this to be done.  His eating has been pretty good but we definitely need to get the fluid intake up.  Yesterday we had Ryan out of whack.  Grandma Pam came up to watch Ryan so we could take the great grandfathers golfing.  The great grandmas also helped Grandma and they said Ryan was out of his element.  He only took a 30 minute nap and just wasn't his normal self.  By the time Mom & Dad got home he looked exhausted.  Mom got him to take some bottle and then got him to pass out.  Mom woke him up 90 minutes later and got him some food in his belling and then he was pretty entertaining. 

In honor of Father's Day, Ryan got us up at 6 a.m. and Dad got Ryan to take a lot of his morning bottle - 6 ounces which is big for Ryan in one sitting.  Ryan gave Dad his gift - a BSU football t-shirt and the new Tiger Woods game for XBox360.  Then Mom & Ryan went to the zoo with Carter and his mom and let Dad have some down time to play his new game and watch the US Open.  We went to the zoo as soon as it opened so there were not many people there and it wasn't too warm.  Ryan did  the best he has done at the zoo and with a few animals he actually seemed to notice them.  Then he started getting fussy so Mom knew it was time to head home.  Ryan passed out in the car seat on the way and of course, as Mom tried to get him in the house and to his bed, he woke and saw the ceiling fan was on in the living room and then he was up.  Finally he went back down about 2:30 and just got up about 4.  Dad is currently working Ryan, who is complaining nonstop.

If anyone has had to deal with Medicaid being a pain on awarding PCS hours and how they won their appeal to get the hours they need, we'd sure appreciate an e-mail.  We have no idea what to expect - we just hope this advocacy group can help us.

June 28, 2009 - The fun has continued this last week.  Get ready for another book. 

On Monday morning Mom faxed the notice of decision to the advocacy group.  Within a few hours, one of their lawyers called.  She had Mom fax her all of the paperwork that the agency had sent to Medicaid and said she would look at it and determine if they could help.  On Wednesday the lawyer called back and said they will take our case.  She said in general the paperwork the agency sent in was ok but it didn't tell Ryan's story.  She said she had talked to her boss who has a son with CP, hydrocephalus and shunts.  He apparently told her of all sorts of things because the lawyer had a laundry list of questions to ask.  She asked Mom if Ryan has had seizures and Mom said yes as well as many infections and shunt malfunctions.  The lawyer said that was going to be her next question.  She said he may still qualify for private nursing based on his history.  After discussing what has happened, the lawyer told Mom that they have been getting a lot of calls from families who have had PCS reduced and one family has written to the governor.  Mom said she has been debating taking it to the media but hasn't got that far yet.  The lawyer said Medicaid is pushing 'natural care' and that is why the unfriendly Medicaid gal kept comparing Ryan to a normal 2 year old.  In Medicaid's eyes, when a family has a kid they have to provide 24/7 care - or natural care - so that is what Medicaid is pushing.  What they are forgetting is that for the majority of families that means the kid goes to daycare because both parents must work and when you have a disabled child that may not be a possibility.  She said the whole point of this PCS program is to help those families to keep the family member in the home and help those families where both parents work so that they don't lose everything in trying to take care of their family member.  The discussion Mom & the lawyer had was very good.  Mom felt so much better afterwards - the best she has felt in weeks about this whole thing. 

The initial plan is to push Medicaid to reconsider Ryan's PCS application based on filling out the paperwork again with better info, sending in all the evaluations we have, and the letter from the doctor.  The lawyer told Mom that if Medicaid does not have those documents with his application then we cannot use those documents in an appeal.  Then if they won't give us the PCS hours we want, then we'll say well PCS would cost you this, a private nurse will cost you that (which is much more expensive) and if he'll have to be institutionalized then it will be even more expensive.  Basically here are the 3 options - PCS is by far the cheapest route.  The lawyer is going to be talking to our pediatrician on Tuesday to see if private nursing really is a better route for Ryan because of the possibility of infection and seizures.  We really like the care provider we have (who is not a nurse) and hate to lose her but if the pediatrician thinks a nurse is best then we will get over ruled.  The lawyer is working in the best interest of Ryan, not Mom & Dad, which we are all for but hate the thought of losing our gal and having to interview more people. 

On Friday, Mom talked with the agency and they wanted to know if we needed to adjust the forms and send them in.  Mom said she needed to ask the lawyer what she wanted us to do because Mom has also decided to up the hours and days to 9 hours a day 5 days a week.  The lawyer said it would be ok to send in the paperwork since we needed those evaluations in.  Mom went back through the paperwork and adjusted as she thought was best, scanned the docs and e-mailed them to the nurse at the agency.  Then late Friday afternoon Mom met with her to finalize the docs. 

The one doc that Medicaid seemed to go mainly based off of was the week at a glance doc, which Mom really changed and had a huge issue with what the nurse initially sent in.  When Mom met with the nurse at the agency it was not at all how Mom wanted.  No mention of all the time needed for therapies instead the nurse put things down for things like bathing, shampooing, turning/positioning, laundry, changing bed, etc. -  all things we did not have listed before nor did Mom want on there.  The nurse wanted Mom to sign this doc and Mom said no this is not what I sent.  The nurse was not happy with Mom and kept trying to get Mom to sign and Mom just kept saying no.  Mom said that the gal at Medicaid said she can't give time for that type of stuff so Mom was not including it.  The nurse kept saying if it isn't marked then the care provider can't do it.  Mom wanted some of those things taken off because we don't want some of those things and need to beef up the therapies.  Oh Mom was livid but trying to keep her cool and be professional.  (Hard to believe I know but she did pretty good.)  Mom & this nurse had even talked about this a week or two ago and now the nurse is fighting her on it?  So the nurse stomped off and made changes to it.  She took off the bathing and shampooing, added on the therapies but left a bunch of other crap.  The total time per day came to over 9 hours (by 2 1/2 hours when Mom's initial change was over by like 30-60 minutes) and she made some snide comment on it.  Mom said that is why on what she sent asked if it can be over the total hours for the provider to show that more than the time requested is really needed.  The nurse said she normally puts only the hours the provider is going to be working.  Mom said adjust it but take some of these other things out and the nurse said 'it's ok we'll submit it because the gal at Medicaid is going to do what she wants.'  Oh Mom was fuming!  So Mom signed it unhappily that it wasn't exactly what she wanted but that it had the 5 hours of therapies per day.  They moved on to the other paperwork and the nurse filled it out word for word as Mom had sent.  (Why could she not have done that for the week at a glance?  Frustrating!!) 

Mom left the nurse copies of the evaluations who said she would fax everything in by the end of the day.  Then she informed Mom that to do a modification of hours just 1 form needed to be sent in - not redoing all this paperwork.  It was like - lady what the hell?  We had talked about this and now you are telling me different things?  Oh Mom was beside herself.  Mom said well we have to get all of this in to see if we can get a reconsideration based on better paperwork and the more hours.  The nurse said she would make sure the Medicaid gal knew that the modification was in the paperwork.  Great - based on what a pain in the butt the Medicaid gal is, she probably won't even look at it.  Mom left the agency very unhappy and very unsure that the nurse would send in all the documents along with worried about what else of a mess she was going to make of this whole deal.  Mom knew it would mean that on Monday she would have to call Medicaid again, see what got faxed over and make sure to have them cross a few things off the week at a glance to get the hours inline.  Oh she doesn't want to.  And then Mom remembered she has a lawyer...  So now Mom is going to call the lawyer on Monday morning and fill her in on what happened, get her to have the nurse send her exact copies of what she sent in and see if she can call Medicaid and talk to the unfriendly gals boss (Mom has her name) and ask for a reconsideration, verify what documents got sent in and take care of it.  Mom is so tired of the nurse at the agency and the gal at Medicaid.  It will be a happy day when she can get done with these people!  We will keep our fingers crossed that having the lawyer call and ask for the reconsideration will make Medicaid know we mean business and just review it again and give us our hours!  A side note to all of this is our care provider picked up another client temporarily until we get Ryan's hours all straightened out and she just couldn't believe the person she is helping is an older lady, whose husband is around, and who can do everything herself but needs a little help with cleaning because she can't once she takes her meds and she is getting 62 hours a week when Ryan can't get the hours he needs and he really needs them over her.  And the 62 hours is what she got cut to with all these changes.  Are you kidding me?  More frustration for us on this whole deal.

This last week Ryan did well working with the care provider and she's been working him.  He's continuing to do pretty good with eating for the most part.  Mom has been working the sippy cup and he just isn't having it.  He was kind of a turkey at feeding therapy but did some nice things for her.  He has still not been doing great at speech therapy so this week we took his little blue chair and he did the best he has done.  Sure now that we're finally getting it started in home he started doing better at the one out of the home.  Friday we started the in home speech therapy.  This next week will be our final week with the current lady and then we'll be doing in home and the care provider will be there for the majority of them.  Ryan has an eye appointment this next Wednesday so we'll see how the eye patch has been working - we think it has helped his eyes but we'll see what the doctor thinks.

This past Wednesday Mom & Dad went to their first Pediatric Family Advisory Council meeting.  When we were back with Ryan in May we ran into the peds social worker and she asked us to think about joining which we immediately did.  Well let's be clear - you don't exactly join.  You fill out an application, they interview you, and then they tell you if you are in or not.  Same way the NICU one works.  We passed the interview and are now part of the council.  The first meeting was good and we are very excited about stuff they are working on and Mom even took away some action items.  We hope we can help make a difference from our experience to make the children's hospital a better place and eventually to work with the families that are in similar situations as us. 

We're heading to McCall for the 4th of July holiday.  It will be nice to get away.  Mom & Dad have a hotel room lined up Friday night and Aunt Lindsey & the rest of the family will get to take care of Ryan that night.  Mom & Dad will be getting a couple rounds of golf in while we're up there and Ryan will be getting plenty of attention from his aunt, the grandparents, and both sets of great grandparents.  It should be a lot of fun.  We hope everyone has a wonderful & safe 4th of July.