Ryan's July '09 Blog
July 1, 2009 - Just a quick update - no book. Mom got a call from the Medicaid gal this afternoon. She had received the evaluations and all the resubmitted paperwork. She wanted to go through the week at a glance doc that Mom had been unhappy with. We went through each item. Those items Mom didn't want got removed and then Mom explained the time for items the Medicaid gal had questions on. In the end we got the number to 9 hours a day that we could both agree on. She then said she was taking it to her manager and would call Mom back. Within an hour she did and said if we can provide them the home exercise programs from each therapist that supports the hours requested then we get the hours we want approved. Why their change of attitude? They received notice that we filed an appeal and that we had legal representation and they don't want to deal with it. The last question she asked Mom was are we going to continue the appeal. Mom said not as long as the hours requested get approved. So Mom went through what she has for home exercise programs and quite a bit is written by Mom so she has contacted each therapist and asked them to write up what they want in the home exercise program and get it to us by early next week. Hopefully by the end of next week this whole thing will be resolved! This is what we needed to be able to enjoy the holiday weekend!
July 6, 2009 - We hope everyone had a wonderful holiday weekend. We had a wonderful time up at Grandpa Eric's place in McCall. Mom & Dad golfed with Aunt Lindsey, Great Grandpa Don, Great Granddad Fred and Grandpa Eric on Friday & Saturday. Uncle Brian joined us on Saturday. Ryan stayed with Grandma Pam & Great Grandma Yvonne. Great Grandma Betty & Great Aunt Debbie came over to visit & play. Friday night Mom & Dad left Ryan with the family and stayed at a hotel. It was nice to get away but neither of us really slept that great - it would have been better if we had been in our own bed. Oh well. Saturday after we finished golfing we had the whole family over for a BBQ plus Uncle Brian and Carter & his parents. Carter found a boulder out back that was just right for him to walk or climb up and then he'd try to jump off of it. He also enjoyed Tucker and the neighbors dog. Carter's parents picked up sparklers so we could do them with the boys since we were not going to keep them up to go watch fireworks over the lake. Ryan didn't really care but enjoyed watching the light and Carter seemed to like them. After the BBQ Mom, Dad, Aunt Lindsey & Uncle Brian headed down to the Yacht Club to meet one of their friends from high school. Mom & Dad stayed for an hour or so and then headed home. When we got home we found out that when the fireworks started over the lake they scared the living day lights out of Ryan and then the neighborhood started doing their fireworks so the grandparents were having a heck of a time getting him to go to sleep he was so scared. Poor little guy! So Mom grabbed him and cuddled him for quite a while until the fireworks around the neighborhood stopped - roughly midnight. We had hoped he would then sleep in but nope he was up at 6 a.m.
Just before naptime on Sunday we packed up and headed for home hoping he would be so tired he would sleep the whole way home. Well that plan started of great until just outside Cascade we came to a stop. Traffic was backed up and moving at a snails pace. He woke up. He was in a pretty good mood after his 20 minute power nap. We hoped once we started moving again he would pass back out but he didn't. We got home over 3 hours later (lots of traffic), unpacked and then Mom fed Ryan dinner. He was so tired he was falling asleep while she was feeding him. She took pity on the poor kid and took him out of the highchair and let him have a 30 minute power nap snuggled up in her arms. When it was time to wake him up, he was having none of it and it took Mom & Dad quite a while to wake him up. Finally we got him up and functioning enough to finish his food but by bedtime he was ready to pass out. He woke up around 2:15 crying this morning and we are not sure if teeth are still bothering him or if he has this darn cold Mom & Dad have been fighting. Mom was able to get him right back to sleep and he slept until 6 this morning. Today he has been pretty tired so we're not sure if it is catching up from the big weekend away, fighting a cold, or a growth spurt. Hopefully he will have more energy tomorrow.
Today Mom has been working to get all the home exercise programs to Medicaid. She has a few more to fax tomorrow and then hopefully we get the final ok and get the care provider working full time so we can really get working Ryan. We got a notice before we left last Thursday saying that Medicaid is now trying to make the families share in the costs. It will be based on the poverty level and how much the family makes over that. So we'll get a double whammy - paying for Medicaid in our taxes and then as this cost sharing. Mom estimates because we make so much our portion will be like $400 a month, which sucks but as Dad says in the grand scheme of things - it is a small price to pay for all they have paid in terms of his hospital/doctor bills, therapies and now care provider. We won't have to start paying until we go through the redetermination process in January or February so luckily we have some time.
July 8, 2009 - Some great news today. Mom got all the final docs to Medicaid this morning and called the gal. She verified that she received everything, went and talked to the manager and approved our hours - 9 hours a day 5 days a week effective today! Starting tomorrow the care provider will work 8:30-5:30 and Dad will be going in to work by 9 and off by 6. We'll actually be able to just be parents in the evening and actually get to spend some good family time together that we haven't had during the week in a really long time! I can't tell you how happy all of us are! We are excited that now our care provider can focus on him all day and really work him. She was working on sitting today and said she had him sitting on the floor today with no support for about 4 minutes - that is a lot. The most Mom has been able to do it is about a minute max. The care provider has also been working with Ryan on standing and is getting him to stand flat footed on the floor with only holding her index fingers for support. Both of these are huge to us! The nurse came by to weigh/measure Ryan. We've been wondering how he's doing - we don't feel like he is losing but weren't sure how much he has been gaining. He weighed in at 27 lbs 5 oz and 34 1/2 inches long. So he is up 1 lb 5 oz and between an inch/inch & a half from last month. Yeah!
July 16, 2009 - Things have been going great since we got our PCS approved. Last Thursday the care provider started working 9 hour days, which means Dad started going to work and getting off earlier. As many people have said to us - we finally get to be a family in the evenings. What a wonderful thing it has been. The care provider has really been working Ryan - especially on his sitting and standing. We have definitely seen progress in just the last week. We started Ryan on Miralax this week to try to get his stools regular again since we've been struggling. Well we've definitely got him more regular and we're seeing the rewards - he is actually acting hungry and willingly taking the food. We went from him taking over an hour at each meal last week to 30 minutes this week. Dad was amazed at how fast and how well he ate dinner for him last night. We just hope it continues! We found out today that an occupational therapist has been lined up for us and we're hoping they will start next week. "Uncle" Chuck from Alabama came to visit us last weekend before he headed to Salt Lake for work. We had a nice weekend with him and Ryan enjoyed seeing Chuck. We ate out a couple times and took Ryan's blue chair. It made a huge difference and we don't know why we never did that before - too many other things going on I guess.
This weekend it will be HOT in Boise so Ryan probably won't spend much time outside. Mom & Dad have a project going in the backyard so we'll probably be out in it. Next week should be pretty quiet for us expect Grandma Connie is coming Thursday because Ryan turns 2 on Saturday - can you believe it? Sometimes it feels like yesterday and sometimes it feels like a life time ago. Thanks for still checking in on us.
July 26, 2009 - Ryan is officially a 2 year old! Still can't believe it. We had a small party yesterday - mainly family and a couple friends. Ryan got a trike, Radio Flyer wagon, Lightning McQueen ride on and some clothes. Mom taught herself how to make his cake and it turned out pretty cute. Everyone had a nice time and Ryan did really good with everything. Friday we went to the pediatrician. Ryan weighed in at 27 lbs 11 oz so he's doing good gaining weight and is 50th percentile. For height he was 33 1/2" and is 30th percentile which was a big jump from 6 months ago. If you check his height for his adjusted age he was like 50th percentile so he's catching up there. The pediatrician was so very please with how he is doing and how his eating has improved and paid Mom & Dad a nice complement for what they've done and how hard they've worked. Last week was a quiet week as most therapists were on vacation. The care provider has been working Ryan good and he's improving on sitting. Yesterday after his party he sat by himself for about 10 minutes and was even able to use one hand to play with his laptop or penguin. Everyone liked seeing that.