Ryan's May '09 Blog


May 4, 2009 - We saw the eye doctor last week and we are to start patching Ryan's right eye in an effort to strengthen his left eye.  It is still a little crossed and she does not want to to do surgery at this point so we are trying other solutions that may help.  We are seeing improvements with Ryan's hamstrings from the Botox.  Now we need to really work him to get them stretched out and get him sitting.  This should be a quiet week, which we are looking forward to.  Thanks for checking in on us.

May 10, 2009 - Happy Mother's Day to all the mothers out there!  We hope you had a great day.  We had a busy weekend.  Saturday morning we did the Race for the Cure.  We thought Ryan would be ok in his stroller for 3 miles.  Boy were we wrong.  Within a few minutes of the start of the race Ryan threw a tantrum.  Of course we wanted him to cry it out because he knows he gets his way when he throws a fit and we now want to get him out of this pattern but with 15000 of our closest friends looking at us we didn't want to seem like bad parents so Dad pulled him out of the stroller and we then passed him back and forth for the next 3+ miles.  27 pounds of dead weight for 3+ miles sucked!  We tried just about half way through the race to put him in the stroller as he seemed really tired so we thought if we laid him back he'd sleep - wrong again - next tantrum.  Of course after the race he was perfectly fine.  Turkey!  Grandma Pam, Great Grandma Yvonne, Aunt Lindsey & Great Grandad did the 1 mile walk so afterwards we all went to IHOP for some food.  We tried Ryan in the highchair there and while it didn't give him enough trunk support he did pretty good with it but got tired of it so we put him in between Mom & Dad and he was as happy as a clam.  Of course by now we're way behind on feedings and he has missed his morning nap.  As soon as we left for home he passed out in the car seat.  We had hoped he was tired enough that he would then take a longer nap when we got home - wrong!  He was in his bed for an hour and wouldn't fall asleep.  By now it is getting late in the afternoon so we might as well get him up.  Grandma & Grandpa came and watched him so Mom & Dad could go to dinner with Carter's parents.  Ryan had fun with Grandma & Grandpa and passed out easily at bedtime.  Of course this morning he was up at 4 fussing.  We weren't sure if it was hunger or not but he did go back to sleep until 6. 

Ryan treated Mom well with a nice card and she got a massage last Thursday.  After Ryan's morning nap we ran to Parma to have lunch with the family and then came home for naptime.  We learned our lesson yesterday about getting him too off his schedule.  His feedings are like a fulltime job so you have to stay on it.

Ryan did really well this last week at feeding therapy.  Worked his mouth really nicely and has done pretty nice with baby food all week.  We had a few rough days of Pediasure this week so now we need to get back on track.  We've noticed in the last week or two that his is an even bigger chatter box than he was before.  His legs are still feeling great and we've been stretching and working on sitting quite a bit.

May 17, 2009 - Ryan got weighed on Tuesday and weighs 26 lbs 8 oz.  We're down 1/2 a pound in 2 weeks.  We have been struggling to get him to take the bottle lately so getting all the calories in him we need has not been happening so we are not surprised by the weight loss.  But if we don't get it together I think we will be forced to get the G tube.  He is teething again so that hasn't helped.  He did wake up at midnight Friday night crying.  When we picked him up and held him he was ok but if you even motioned for his bed he got upset.  We finally got some teething medicine on board and finally got him back to sleep.  Tuesday he did not eat well for the physical therapist but it may have been what we were feeding him and Thursday he did great with the feeding therapist.  He has actually eaten baby food much better than he has drank the bottle.  The great grandparents got him to take 90% of a container of peaches on Friday which is amazing.  We've been working on other foods for him and he did great this weekend eating avocados and pork & beans.  This weekend he had his ABM therapy and the therapist is seeing some nice changes in him.  Saturday we spent a lot of time in the backyard and he did really good.  Today he got to see his buddy Carter for a little bit but got fussy - don't know if it was the heat (it was about 85 degrees and we were sitting outside in the shade) or tired (he has not taken an afternoon nap in 3 days).  We ran a few errands and he did really good sitting in the shopping carts at the stores.  Much better than we expected he would do. 

Tuesday Ryan is having surgery.  Yes surgery.  Number 19 to be exact and the reason - circumcision.  We have been trying to get it done for 15 surgeries now but our general surgeons would not do it because of some extra skin or something so we were told we'd have to go to a urologist but there are no pediatric ones in Idaho.  Back in November we mentioned it to our pediatrician and she checked Ryan out and she was like they should have done it but she referred us to a urologist here that does do them.  The urologist took one look at him and didn't see any issues.  We decided to wait for RSV season to get over and give him more time off oxygen - get his lungs a bit stronger before we do the surgery but only had until his 2nd birthday to get it done.  We are mad at ourselves for not mentioning it to our pediatrician sooner so it could have been done in conjunction with another surgery.  Now we have to have one just for this.  UGH!  That can be one of the problems with too many doctors - thinking they are all speaking to each other or thinking you already told them about it.  Luckily it is an outpatient surgery.  We will be having it done at St. Lukes downtown since they know him rather well and we have to be there at 6 a.m. for pre-op.  Ryan should get to see his pre-op friends.  Surgery is at 7:30 and he will be put on a ventilator.  It will probably take longer to get him on the vent than the surgery.  We expect surgery to be done by 9 and to go home by noon.  If he has a hard time coming off the vent he may have to stay overnight for observation so we're keeping our fingers crossed.  We put the word out to a few of his hospital ladies and we're hoping to get to see 3 of them so that will be the only nice thing about it.  Mom & Dad will be off with him Tuesday & Wednesday to make sure we can keep him comfortable.  Getting pain meds in him may be a challenge so we don't want anyone to have to deal with that.  We'd sure love some prayers that he comes off the vent ok Tuesday so we don't have to stay the night.

May 19, 2009 - Surgery went very well today.  In pre-op Ryan got to see Angela & Dave plus the chaplain Carla, who has been checking in on us since the night Ryan was born & came in once she saw his name on the surgery schedule.  Nurse Suzi came by after shift change so we had all sorts of people in Ryan's pre-op room.  We were very happy when we talked to the anesthesiologist as he was not going to put Ryan on a vent.  There is some other apparatus that they use that does not go down as far but opens the airways.  He said if that didn't work well then they would try the vent - we were keeping our fingers crossed that it would work.  They wheeled Ryan (& his Curious George) to surgery around 7:40 and Mom & Dad went to breakfast with nurse Suzi and had a nice visit.  Surgery finished just before 9 and after they let Ryan sleep a bit we were taken back to recovery.  With 18 surgeries under our belt we never have been to pediatric recovery until today.  We always went straight up to a room.  Ryan was still a little groggy when we got there but he was trying to talk a little bit.  The surgery staff had prepped George for surgery and he looked very cute as you will see in the pictures.  Mom rocked Ryan for a while and he slept on her shoulder.  Then we gave Ryan come pain meds, which of course he did not appreciate, and then he rocked & slept with Dad.  Then we got the all clear to go.  As soon as we put him back in his clothes he started to be a little bit more awake.  We then ran up to pediatrics & PICU to see his friends.  We immediately ran into Shauna, one of his nurses from our days in oncology.  We visited with her & unit clerk Ben and then many more staff came up to us.  They all could not believe how big Ryan was and how much he has changed since they saw him last.  We got a tour of the new section from the PCCs and then headed down to PICU.  He got to see many of his ladies - Tammy, Karla, Carrie, Brandi to name a few and they also could not believe how much he has changed.  Ryan was still kind of quiet so they didn't get to see how fun and talkative he is so we'll have to go back another day.  Then we headed home at 11.  We got him fed and now he is playing with Dad like nothing ever happened.  It is very nice to have this one behind us and so very glad that we didn't have to be on the vent and have any sort of set back.  It was also very nice to see our friends at the hospital and to know that Ryan is still very much loved by them.

May 26, 2009 – We hope everyone had a nice Memorial Day Weekend and took a minute to remember those that served our country. 

Wednesday we had to take Ryan back to the doctor as he was not peeing.  We forgot that anesthesia really hits him and we’ve had issues in the past where it takes almost 24 hours for him to pee and they usually have to catheter him.  We were checking his diaper right before we left for the doctor and he peed all over the changing table.  We still took him in and the doctor drained about 4 ounces from him and after that we have not had problems.  We’ve been working hard on getting his feedings going again and he’s being a stinker.  Bottle feeds have been horrible but baby food has been good until Saturday night.  Now we’re struggling all over.  We see the pediatrician on Thursday to see how he weighs in and to see if we get to send the feeding pump back or if the tube goes back in.  We’re trying hard to count his calories and adding good high fatty foods to his diet.  Feeding therapy last Thursday was horrible and we attributed it to surgery.  He ate well for the physical therapist tonight so we're hoping the eating picks back up. 

Saturday we went to the Westside Drive In for lunch and then to the zoo.  The zoo was very busy but it was a nice day and Ryan did well although he could care less about the animals.  We’ll keep trying.  Sunday we ran errands and had dinner at the great grandparent’s house.  Monday we did yard work and had Ryan outside.  We even tried him in his pool.  He did ok in it but it was a little windy and the water wasn’t warm like he is used to so we need to try it later this week when it is suppose to be 90 degrees. 

May 31, 2009 - As we close out May, we end on a great note.  We saw the pediatrician on Thursday and Ryan weighed in at 26 lbs 4 oz.  We've lost 12 oz since we last saw her but when we showed her our food journal for him she was so very pleased.  She was ok with his bottle intake going down as long as the solid food was going up and it has.  He is now getting 1/2 of his daily calories from solid foods.  We have been trying very hard to measure the foods out so we can figure out how many calories are in each one and we've been adding canola oil or whipping cream or butter to them to give a calorie boost.  She dc'd the feeding pump so we gladly turned it in on Friday.  It was a great day for us - no more medical equipment.  He has come a long way.  Could we be over the hump with his feeding issues?  He has eaten great this weekend.  We pureed up some scrambled eggs with whipping cream that he appeared to like and last night we cooked up a sweet potato and mashed it with some butter and he appeared to like it as well. 

We've still been having issues getting him to take naps so today we decided to see if he is just trying to tell us that he only needs 1 a day.  Today he lasted until 1 p.m. and easily went down so we'll see if this is the schedule he wants to keep.  He has been nice and sleeping in until about 6:30 in the mornings so Mom & Dad were able to sleep in a little bit this weekend - we sure hope that continues with the 1 nap.  Grandma & Grandpa & Aunt Lindsey came over yesterday afternoon to see Ryan and then the Great Grandparents came over for dinner.  We spent the day outside and Ryan got too warm so we did have to take him in to cool down.  We tried him in his pool and he wasn't too stoked about it so we brought out his duck bathtub and put water in that and he enjoyed that much better.