Ryan's November '08 Blog

November 2, 2008 - Ryan has been off oxygen 6 days and counting!  He has been doing wonderful with high saturations every time we've checked him.  We were checking him 3 times a day but Dad talked to the pediatrician on Friday and she said only 3-4 times a week.  That may be hard for us so right now we're only checking him in the mornings.  The pediatrician also cancelled the oxygen order so on Friday we turned back in all the oxygen tanks to Norco - what a great feeling that was and how wonderful it has been to not lug around that oxygen tank!  Increasing Ryan's formula volume overnight has certainly helped as he weighed in at 22 lbs 8 oz on Thursday morning - that is almost a pound increase in 3 days.  The home health nurse said it will probably slow down next week and that the quick weight gain was just us catching up.  Bottle feeds have not been great this week as the cutting teeth saga continues.  Last weekend we mentioned 2 had cut and Mom thought one more was cutting - it is actually 2 more about to cut and one more spot is swollen like we're going to start cutting.  We've kept Tylenol and the teething tablets on board all week - which we are very surprised how well he takes the teething tablets.  No fighting putting them under his tongue (nice change).  Mom is debating introducing puffs again - the first time we tried it went badly.  Hopefully these others will cut soon and we can get back on track. 

Friday we ran to Parma to see Great Grandma, Great Grandpa, Grandma and Grandpa.  Ryan looked very cute in his giraffe outfit and he had a blast.  He played with Great Grandpa for a long time and it was very cute.  On the way home he got fussy as it was his bed time but we had to stop at the other great grandparents on our way home.  He got a little happier when we got out of the car seat and was ok with putting the giraffe outfit back on and perked right up when he was in the great grandparents arms - caught another wind.  He crashed easily when we got home.  Saturday we had both sets of great grandparents, Grandma/Grandpa and Aunt Lindsey over to celebrate Dad's birthday.  Dad made his wonderful pulled pork recipe and we watched the BSU game as well as the Texas game.  Ryan of course had a blast with all the attention.  He was tuckering out by 7 p.m. and snuggled with Great Grandma Betty until Mom put him to bed around 7:30.  Today we've had a lazy day around the house as the weather isn't the greatest.  Ryan's adventures out are coming to a close and we will be very careful who we let visit now that RSV season has started. 

Don't know if any of you saw Oprah on the 28th about the miracle kids.  There was a story about a little boy named Eliot that was born with a disease in which he would not survive, he lived only 99 days, but his parents took him home and made the most of each day - blogging his story, taking pictures & videos, and at each month he made it they had a birthday party with cake.  Apparently there is a video of it on YouTube.  It was a very touching story and brought tears to Mom & Dad's eyes as we could relate in some way.  We are thankful everyday for Ryan but when we see a story like this it makes us even more thankful for our son and the will to live he has.  

November 10, 2008 - Ryan turned 1 years old adjusted today!  (Today was Mom's due date so that is what we base him on developmentally.)  We had a small celebration after the BSU game Saturday.  (With RSV season we stayed home and gave Nurse Suzi our tickets.)  Mom and Dad got Ryan a couple presents (learning tool bench and Tickle Me Cookie Monster) and we had cupcakes (yes we let Ryan dig into one which he didn't care for).  Ryan was pretty cute but got very messy so we had to throw him in the tub after we were done with the cupcake.  We tortured Tucker (golden retriever) with the Cookie Monster and he didn't appreciate it. 

Last week Ryan weighed in at 22 lbs. 14 oz.  Still gaining and doing well.  He is still off oxygen and still doing great.  It's been 2 weeks today and counting!  Oral feeds have definitely slowed down since we increased the volume so we have to get this figured out.  Ryan also gets really pooped in the afternoon and we think it is because he isn't getting enough volume but getting enough sleep.  Our new tactic is to push in some more food while he sleeps with the hope it will give him more energy so he should play more and then hopefully get him hungry.  It is such a double edge sword this eating bit.  You have to give him volume to keep him gaining weight but if you give him too much he won't be hungry to take oral feeds so then you can't work on getting volumes up but if you don't give him the feeds by the pump then he loses weight.  How are we ever supposed to get over this?  There has got to be a place where it will balance out and we can start moving forward but we are not there yet.  Last week with PT Ryan was doing well so we did try puffs again and he did wonderful.  We have continued working with him and it has not gone as well but we keep trying.  We've also picked back up trying baby foods.  We had slowed down after he started taking the bottle with his eyes open so we could focus on getting volumes up and getting rid of the feeding tube but since this has slowed we might as well try again. 

Our service coordinator with the Infant Toddler program came to last weeks PT appointment and she was amazed at the progress in Ryan from the last time she saw him in September.  While Mom & Dad at times feel like the progress is too slow, we are making progress and we keep telling ourselves that but we always feel like there is more that could be done.  We had an MRI today to see how Ryan's ventricles are and to hopefully establish a new baseline image.  We did not see the MRI afterwards but the neurosurgeon is to take a look and give us a call.  We did meet with the neurologist today and he is very pleased with how Ryan looks and we don't have to go back for 3 months.

November 17, 2008 - Not a lot to write this week.  Ryan weighed in at 23 lbs 4 oz last Thursday and is still off oxygen with his saturations looking great.  We heard from the neurosurgeon regarding the MRI and it looks like it did before the last surgery (drained with just a little bit of fluid) so we'll assume this is Ryan's new baseline.  They don't want to see us for 4-6 months unless something comes up.  Whoo hoo!  We had the hearing appointment on Friday morning and they recommended that we go ahead and order Ryan his own hearing aids (we have loaners right now).  We still don't see any difference and it is so hard to have him wear them when he gets feedback but we do need to give them a fair chance.  He has been a chatter box lately without the hearing aids in and his favorite lately is ma ma ma.  At times it sounds like mom.  This evening when Mom was feeding him cereal she asked if he thought it was good and just as she was saying good he said gooo.  We'll take that as he liked the cereal.  He actually did really well with cereal tonight - no gagging or leaving his mouth wide open until he is ready to deal with it.  He just took it.  We've really been working on rolling over with Ryan as he seemed to stop doing it.  About a week of working with him and he's becoming a rolling machine.  Let's hope that continues.  Mom's been working with Ryan doing army crawling in an effort to try to get him to figure out the whole crawling thing.  We think he has a lot of it figured out but why should he work when he knows people will help him?  It is like the whole eating thing - why bother taking a bottle when he knows he gets magically fed?  We did a little experimenting this past week.  After Ryan gets up from his 2 hour afternoon nap he is rubbing his eyes and acting tired about an hour and a half later.  We wondered if we fed him 100 mls an hour while he slept if that might give him more energy when he got up.  The first couple days it seemed to make a difference and then it didn't.  It also made worse the bottle situation so we've stopped that.  This week we'll keep working on the bottle and get his weight up and then next week while we're off for the holiday we're going to get him hungry.  Our weekend was not exciting - stayed in or went over to the great grandparents.  This will probably be our life from now on until RSV season is over.  Tomorrow we have an eye appointment and we'll be interested to hear what new they find.  He does appear to have a crossed eye - it used to seem like it didn't happen all the time but now it is seeming like it is happening more often so I'm sure we'll need to get that corrected.  Sorry no new pictures this week.  We'll try to get some soon.

November 18, 2008 - We had the eye appointment this morning and while we thought they would say he is cross eyed - he isn't.  The actually told us he is far sighted and needs glasses.  They said he is at high risk for becoming cross eyed and what we see him doing may just be him really trying to focus.  Hopefully with the glasses this will help that out.  So we had to pick out some frames that we hope he will keep on his face.  He looks pretty cute in them but hated us trying them on him.  Putting them on he got mad but once they were on he was ok.  We should get them in a few weeks.  We aren't surprised he has eye issues with Dad being far sighted and Mom being near sighted - he is doomed to have bad eyes.  We just didn't expect it to happen now. 

November 23, 2008 - Ryan weighed in at 24 lbs 4 oz Friday - a whole pound more than last week.  We can definitely tell - bigger belly and double chin - he is back to being our fat boy.  We will be starting speech therapy after the first of the year and we're going to have an occupational therapy evaluation done as we think we need to get that started again.  Our OT from home health left a couple months back and we haven't had one with the Infant Toddler Program yet but our home health PT brought it to our attention that we really need to get that back on board.  Hopefully we can get that started after the first of the year as well.  Ryan continues to say ma ma or at times mom and there are some gooos as well.  We spent Saturday in Parma at the grandparents to watch the BSU game.  We have been testing out letting Ryan sit forward in his car seat and so far he has done wonderful.  We know the new recommendations are 30 lbs but his poor little legs are all scrunched up sitting backwards.  He seems to like it much better and did great on the ride down to Parma.  Of course with everyone giving him attention, Ryan did not want to take his afternoon nap.  He did finally wear out around 7.  When we got ready to go he woke up and was ok until he got in the car seat and then he cried and complained the whole way home.  It even took a bit to get him to sleep after we got home.  We had hoped he would sleep in but was up by 6.  He has one last tooth that is so close to cutting and we are not sure if that is impacting his mood lately - he has been throwing little tantrums this week.  Could the terrible 2's be setting in already?  Please no!  This will be a short week and then we'll be heading to Parma for Thanksgiving.  We're going to stay over Thursday night so we don't have to deal with the crying all the way home.  We hope everyone has a wonderful Thanksgiving!

November 30, 2008 - Ryan turned 16 months on the 25th - can you believe it?  Can you believe it has been 1 year today that we got to take him home from the NICU?  We remember that day so well - all the excitement of bringing him home.  It is just so hard to believe it has been a year already. 

Ryan weighed in at 24 lbs 10 oz on Tuesday and got his next RSV shot.  We started another boot camp where we fed him only 1/2 his overnight feed Wednesday night, worked with the bottle all day Thursday, fed him nothing Thursday night and worked with the bottle all day Friday.  He has also been getting cereal 1 or 2 times a day and Friday night he got applesauce.  He has actually been well with the bottle.  Yesterday he took the most orally in what seems forever.  It still is a long way from the volumes we need to be at but we have made small improvement.  He also is taking cereal and applesauce without much issue and taking the most he has taken in quite some time.  He has been a rolling machine lately and we love it.  Dad called Mom on Tuesday saying Ryan had rolled from his blanket over to the coffee table and was playing with the stuff on the bottom shelf.  We were so excited that he is finally curious enough to move him where he wants to go!

Thursday morning we headed to Parma and spent the day and night there.  He enjoyed all of the attention he got, took short naps and pooped out by 7 p.m.  Friday he was up by 5:30 but we got him to go back to sleep by 6:30 and then he slept until Mom made him get up at 8.  He pretty much had the tape of his feeding tube off so we pulled the feeding tube Friday morning and let him go without it until Saturday night.  It was so nice to not have it and we loved not seeing it taped to his face.  The only thing that sucks is his poor skin gets a little irritated when you take the tape off so his cheeks get all red.  We headed home Friday late morning and Dad then got ready and went to the BSU vs Fresno State game.  Mom stayed home with Ryan and they had a good time watching the game.  Saturday he spent part of the day with the great grandparents so Mom & Dad could run some errands and today we ran out to Aunt Lindsey's house to hang her Christmas lights.