Ryan's April '10 Blog
April 4, 2010 - Happy Easter! We hope everyone has had a nice weekend. Our week started off with Ryan coming down with a cold on Monday. Mom and Dad were up with him Monday night and stayed home with him Tuesday. He seemed to be feeling better by Tuesday afternoon and has just had a snotty nose and a cough the rest of the week. We had hoped to try out a new caretaker this past week but her kid was sick with the flu so we were not able to try her out until Wednesday. Then unfortunately her daycare called and said the kid's fever was back over 101 and he had diarrhea so she needed to go get him so we only had her for 3 hours. She was unable to make it back the rest of the week. We are going to try her out this next week instead.
Mom had Friday off as a holiday and Dad took the day off so we had an eye doctor appointment for Ryan and then later in the day we went to the hospital for the grand opening of the new Teen Room. We got to see a few of our friends & a few of Ryan's ladies. We found out one of our favorite RT's is moving to Utah soon so it was most likely the last time we'd get to see her. We're happy for her but sad she won't be around when we have to come back.
Saturday we ran some errands and got Ryan down for a nap. When he got up he smelled like he had spit up a little bit - we just thought it was reflux. Dad started feeding him lunch and after the first jar Ryan threw it all up and then some. We thought maybe his tummy was upset and we'd give him a break for a bit and try later. By about 4 p.m. he totally changed - didn't want to play with Great Granddad or Grandpa, only wanted to snuggle and really wanted Dad. He also started acting like he was really tired after he'd just had a 2 hour nap. We got him home and tried to feed him dinner but he refused. He kept acting tired so we put him down. He got up an hour later and then started throwing up, crying, acting like he hurt. Oh no - could Ryan have the flu? As the night went on he had the classic symptoms of the flu but what is hard for us is flu symptoms are also the signs for shunt infections and malfunctions. We decided to see how the night went before we did anything. He'd want to drink the Pedialyte but within seconds would throw it up. We'd try to get Tylenol onboard and we'd get a little in him and he'd immediately throw it up. We knew if we could get the Tylenol on board he'd feel better in so many ways but never really could. He had a small temp most of the night that never got to 101. We'd get him to sleep for small periods - a half hour here, hour there and one chunk of 3 hours (which Mom & Dad appreciated). He couldn't get comfortable, was all out of sorts, and we couldn't do anything to help make him feel better. Finally we decided to take him to the ER about 8:30 this morning. We knew we were getting close to being dehydrated, he was still throwing up (mainly dry heaves but sometimes green bile), we wanted to verify there was nothing going on with his shunts and get him some pain meds on board. The ER got an IV started and got fluids going. They gave him an anti-nausea medicine that he actually did ok letting the pill dissolve in his mouth and they did a shunt panel of x-rays plus a bunch of lab work. The x-rays and lab work came back showing nothing going on with the shunts (thank God). They diagnosed with him with the flu. Once the anti-nausea had time to work Dad got Ryan to take Tylenol and Motrin orally. Then we were able to get him to drink some water and then some Pedialyte and he was much happier and seemed to be feeling a bit better. The ER doc talked to the neurosurgeon who said we know Ryan best and if we felt a CT was needed he'd order it. We didn't feel it was needed - we truly felt Ryan had the flu but had to take the shunts out of the equation so we opted not to have the CT since the rest of the x-rays and labs looked ok. We're to call the neurosurgeon tomorrow to follow up. We're due to go see him in the next few months and get a full MRI done so we may just push that up a little bit but we'll see what he says tomorrow. So far our Easter has been quite eventful but luckily we were not admitted to the hospital. We came home about 11:30 and Ryan has been asleep for a good 2 hours now. We told Ryan this better not be a ploy to go back to the hospital since he just saw some of his ladies on Friday. Needless to say we won't be doing anything for Easter today and we're not sure if we'll be making it to work tomorrow.
April 12, 2010 - Well we had quite a fun week. We were home most of the week with Ryan who slowly got better after our trip to the ER. We were finally able to get fluids in him, he slept a lot and did better with pain meds on board. It took quite a while to get him back on solid foods and we're not 100% yet but we're close. We thought for sure the oral aversion was kicked back up and we'd be back to putting the feeding tube in. By about Thursday he was 80-90% himself again and Friday he was about 95% himself. Saturday we'd say outside of feeding he was 100% himself. He woke up around 5:30 happy as could be and talked and played in bed for an hour before Mom & Dad could finally drag themselves out of bed. We cancelled all therapies and appointments last week and are starting them all back this week.
We did get the new caretaker in a few days last week but where Ryan wasn't 100% yet she didn't really get a chance to work him and have a fair shot. Today was their first day of really working and it sounded like it went well. Ryan was very happy with her and it sounds like she got him to say bounce and arm today. She's here how many days and getting him to say how many new words? Mom has to say when she got home last Friday Ryan was having the best time with her and it seemed like a big difference from the other caretaker. We will probably be making the switch permanent.
We found out from Medicaid they are cutting our caretaker hours from 45 to 25 hours per week. Once Ryan goes to preschool that will be perfect but we have to figure out what to do until then. We're not sure we'll fight Medicaid and try to get more, hire someone else to come in, or adjust schedules/ask the great grandparents to help as they can until we can get to August. Mom is also asking the agency that we get the caretaker from if we can privately pay for those extra 20 hours and keep the same caretaker. We really don't want 2 coming in each day. We have to get this figured out by the end of next week.
Mom & Megan continue to do well. Mom is at the uncomfortable stage and is about ready for this part to be over. Tired of Megan's foot up in the ribs and all that fun stuff. At last weeks appointment when the doctor checked Mom she said that Mom is starting to dilate. Currently it is not putting any tension on the cerclage stitch but if it does the cerclage would need to come out and most likely we'd be delivering. So Megan may still arrive early but right now we're 35 1/2 weeks so we'd be ok. They also hooked Mom up to the NST machine and Mom did have a contraction even though she really didn't feel it. Mom now goes in weekly and this Thursday will again be checked and hooked up to the NST machine.
April 15, 2010 - Quick update on Mom & Megan. Mom had her appointment today and the doctor decided it was time for the cerclage to come out. Mom is dilated to 1 1/2 and the doctor said it is highly likely that Mom will deliver in the next few days. Yikes! While Mom has said she is about ready for this to be over it did send her to a panic of are we ready? Will Megan be ok and not have to go to the NICU? Mom will be taking it even easier than before just to see if we can get Megan to stay in another week. Now we're watching for contractions 10 minutes apart, water to break, bleeding or low abdominal pain (could be caused by scarring of the cervix from the cerclage). If any of the above mentioned happen, we're to head to the hospital. Grandma Connie is on alert that we may have to change her plane ticket and Dad was to call the great grandparents to warn them of the chance that we may have to call in the middle of the night and need them to watch Ryan. Now the wait and see begins!
April 19, 2010 - A few days have come and gone and no Megan. Mom went to the doctor today and she is still dilated the same as last week but Megan has started dropping. So we'll continue to wait and see if she comes early or arrives on May 7th!
April 27, 2010 - Ryan continues to do wonderful with his new caretaker. New words popping out of his mouth almost daily and yesterday he took steps in his walker like he never had before and she caught it on video! We've been working on crawling and he is scooting but not full army crawling. The Botox has really kicked in again - it makes such a difference in his ankles when we do it in the calves. Sunday was a nice day so we spent time outside and Ryan loved it.
Mom & Dad celebrated their 5th wedding anniversary on the 23rd. We celebrated by going to dinner and getting ice cream while Ryan went to the great grandparents to play.
Mom & Dad met with the elementary school today and went over his education plan with all the therapists and teachers and as of right now he is all signed up and ready to go for fall. We've even got him slated for the school bus. They will come to our house and we will wheel him out in his stroller, they'll load him up on the wheelchair lift and put him in the car seat. Last night we went to the open house for the JumpStart program, which is an intensive therapy based preschool. We got to see the facilities and hear more about the program and see other families that are also on the waiting list. They will probably start the screening process in June as they will be having roughly 5 openings between July and November. What they do is bring everyone in that is on the waiting list and screen them and determine who would be the best fit. Our caretaker hours start their reduced amount this week. Mom and Dad will be paying privately to have her come in extra hours and we've got the great grandparents that are going to help us out. We have also started down the road of a developmental therapist, which if we get the paperwork done by June will most likely be able to start August 1st until preschool starts - that would be nice! More work for us to do after Megan arrives.
Mom went to the doctor yesterday and is still dilated to a 1 and 75% effaced. The doctor did feel scarring on the cervix so this is most likely why we are not dilating. Mom's blood pressure has slowly been climbing up and she is starting to have some preeclampsia symptoms so now we're being watched for that. Some tests were ran yesterday and Mom goes back in on Thursday to get checked out and determine if the doctor is going to order bed rest. The doctor is hoping since it has been gradual so far that we'll be able to last until the 7th. Starting today though Mom is working from home until Megan is born in an effort to try not to be on her feet much.
April 30, 2010 - We end April on a good note. Mom went to the doctor yesterday and the doctor is happy with what Mom has been doing to stay off her feet. No bed rest was ordered. We're still on schedule for next Friday unless Mom goes into labor before then or has a change in symptoms. The c-section is scheduled for noon now next Friday.