Ryan's September '08 Blog

September 1, 2008 - We have had a busy labor day weekend.  Saturday we were busy getting ready for the football game and then it was time to go.  We tailgate 3-4 hours before the game.  Ryan did really well even though it was hot and we tried very hard to keep him cool and hydrated.  He fell asleep right after we got into the stadium and slept almost all of the 1st quarter.  He was up the 2nd quarter and then we went out to the car to give him some food during halftime.  He was awake for the 3rd and 4th quarter but by the end he was getting tired.  We got out to our car after the game and he was still doing ok so we started to pack up.  He started getting unhappy so Mom grabbed him and he fell asleep pretty quick.  We got him in his car seat without him really waking up and then he slept until we got off the freeway at Eagle Rd. and then he screamed all the way home (about 5-6 miles) and of course we couldn't get him out of the car seat to comfort him and he hated that.  As soon as we got home and Mom got him out of the car seat he settled down but when she put him down to get him in his pjs he started up again.  Finally got him all ready for bed and into bed and he was out as basically as soon as his head hit the mattress.  We got his food ready and got it going and after the first feed he threw up.  He probably had so much air in his belly from crying so much.  The rest of the night we didn't have much trouble.  We were so proud of him and how well he did - what a little trooper.

Sunday we took him to the last home baseball game.  It was quite a bit cooler than the day before so we had him dressed warmly - probably too warm since he is such a warm body but we didn't want to take any chances of him getting a cold.  He did really well for about an hour but then started fussing and getting upset (it was also bed time).  The wind probably didn't help so we headed home.  He did ok at first on the way home and then a few miles from home started screaming again until we got in the house.  Got him ready for bed and he went right to sleep.  Again we had the problem of him throwing up after his first feed and this time it was an odd color.  We tried to get something to pull back in his feeding tube with a syringe but no luck - it pulled back hard and then snapped back.  We were concerned and called nurse Suzi for advice.  She said that pulling back hard and snapping back usually means it is in too deep - down in his intestine so we pulled it back a couple centimeters and no change; we tried putting it in more and pulling it back more and nothing seemed to work so we pulled it out all together.  It appears that something that looked like blood was clogging it in a way that it let fluid in but when you tried to pull back it blocked the tube.  Dad flushed the tubing out and then we got it back in and it worked as expected and we didn't get anything fluid back that was the odd color.  We checked Ryan's belly sounds - Suzi told us what to be looking for that could be signs of belly issues - and all sounded good.  Got Ryan back in bed and had a great rest of the night. 

He has been really good today, let us take him furniture shopping, but his belly has gone up another 1/2 cm and the veins are starting to show in his skin.  He also did not poop all day today until this evening after we gave him some applesauce so we are continuing to grow more concerned.  We are going to call the neurosurgeon in the morning and ask him to check Ryan out.  We have the next hearing test tomorrow at 11 a.m. and assume this will tell us if we need to talk hearing aids so it could be a busy day if we get in to see the neurosurgeon.  Everyone please pray for Ryan that all is ok.

September 2, 2008 - We have a call into the neurosurgeon but have yet to hear back.  We know he has used his clinic day as a surgery day on the first day after a long weekend so we are not too surprised not to have heard from him today but we do expect to hear from him tomorrow.  We had his nurse come out and check his belly and his feeding tube.  She agrees with us that his belly is alarming and needs to be looked at.  She thought his feeding tube was ok so for now we'll relax on that one.  Ryan saw his new physical therapist late this afternoon and she seemed pleased with a lot of things he was doing.  She agreed with us that we need to desensitize his mouth versus work on stimulation.  She has a toy that she wants us to get and is to bring us the catalogue.  Last night at dinner Mom had tried something new with Ryan.  Instead of shoveling food into his mouth and making him work through it, Mom rested the spoon on Ryan's bottom teeth and let him close his mouth on it when he was ready and take what he wanted and he did much better with it.  The therapist liked this tactic so we will continue trying this. 

Ryan had his hearing test today and of course failed.  They tell us he has mild to moderate hearing loss but don't know for sure.  They recommend hearing aids to see if this will help Ryan out but they are not sure it will.  That is the thing with auditory neuropathy - there is not one answer or treatment and no consensus from what we've read.  Again we will have to wait and see.  They fit Ryan for the piece that goes in his ear and those will be ready in about 2 weeks so we will go back on the 16th to get them.  We will also make an appointment with their speech therapist for an evaluation.  We will also be having one through the Infant Toddler Program.  While Mom & Dad braced for the hearing aid news, it is still hard to hear.  When will things like this stop happening to our sweet little boy?  We thought we were finally getting a break but it is starting to appear as though he is not going to get one.

September 4, 2008 - Bring on surgery #18!  Yes surgery is in our future.  We finally got in touch with the neurosurgeon's office yesterday and they scheduled us to come in today at 11.  They said if they wanted a scan done they would let us know.  We got a call this morning around 9 saying to check if for a CT scan at 10:45.  When the lady came to get us for the CT she asked if we knew if they wanted contrast in the CT.  We did not know.  She asked if we were to have surgery today and we said it probably depends on the CT scan.  She decided to check with the radiologist who said call the neurosurgeon.  We waited forever to hear back and he said yes.  We put some of the contrast down through Ryan's feeding tube and waited awhile for it to work its way through his body.  Then we had the CT scan that Ryan did really well during (because they didn't strap him down like they do with the MRI machine).  We then headed to the neurosurgeon's office.  No one was there and then his receptionist showed up after a couple minutes.  She had just returned from getting lunch so she wasn't sure where he was so she put us in an exam room and paged him.  After an hour Mom went to check on how much longer it would be.  It was now 1:30, we hadn't eaten lunch and Ryan was tired.  She said he never returned her page so she paged him again.  Mom asked the receptionist to let her know if she'd heard anything in 15 minutes as Mom had a 2:30 appointment across town and needed to know if she should cancel or not.  15 minutes later the receptionist said still no word so go ahead and go and she would have the neurosurgeon call us when she saw him.  We asked her to pass on that Ryan is starting to get out of breath when he plays and last night he had such a hard time pooping and farting.  Then Mom went to her appointment and Dad went home. 

Sometime after 4 p.m. the neurosurgeon called and apologized for leaving us hanging.  We are not sure what happened but assumed it must have been an emergency because him and his nurse just left and didn't lock up while the receptionist was out.  The neurosurgeon said, as we expected, Ryan is not absorbing the fluid and figured it could be because of all the adhesions.  From the CT he does not believe there is any infection and believes the shunts are working but there is a defined pocket of fluid in the abdomen.  He said this fluid is pushing the intestines up into other organs and that is why we are seeing the shortness of breath and the problems pooping/farting.  He expects we should start seeing more spit ups and we will have to watch that he stops pooping/farting and has more retching.  If so then we will need to do something right away - like tap his belly.  The plan as it is now is tomorrow we got back in for a nuke med test on the gallbladder to see if it functions well enough to have the shunts drain there.  If so then surgery will be the beginning of next week and will be done by our pediatric general surgeon.  While we are testing the gallbladder tomorrow we are hoping to also do a ultrasound guided tap on his belly to relieve that pressure so we can make it thru the weekend without having to rush him to the emergency room.  A lot of this is very reminiscent of last December when we rushed him in with the infection.  The only difference is he doesn't act like he doesn't feel well.  He is his happy playing smiling kicking self - he just can't play as long as normal - so this really sucks to be happening.  We should find out the date and time for surgery tomorrow and we're hoping it is Monday so we can get home by the weekend.  They hope to go in through existing scars on his belly, they will not go into his head.  They plan to put a Y joint on the tubing as apparently only one tube can be put in it and then will stitch it into the lining of the gallbladder.  The neurosurgeon said the gallbladder should absorb it nicely.  The only thing we will have to watch is when Ryan is an adult we will have to watch out for infections of the gallbladder but for now it should work well.  We sure hope so because earlier this spring we wrote that this was our last option. We will update once we are through with the tests and have a date for surgery.  We sure wish Ryan could have some luck.  If it is not one thing it is another.  Please say a prayer for all to turn out ok.

September 5, 2008 - Ryan had a decent night - slept until 8:30 this morning.  We adjusted his formula to the predigested stuff so it would be easier for him to have a bowel movement and it appeared to help him.  We never got a call back last night for a test today and just heard back from the neurosurgeon's office (1:30 p.m.) and his HIDA scan is Monday around noon and will take a couple hours.  Surgery is Tuesday about 3:30 p.m. and we're not sure how long that one will take.  We are not getting belly tapped today so we made sure if we have to rush him to the emergency room the neurosurgeon is around this weekend and he is even though he is not on call.  We're keeping our fingers crossed that we don't have to go to the emergency room. 

September 7, 2008 - After work Friday we took Ryan to Art in the Park and he did well for the most part.  He got tired of being in his stroller so we took turns carrying him.  While we were there we got a call that our HIDA scan had been moved from about noon on Monday to 7 a.m.  Friday evening Grandpa Eric came by for some quality time with the little man before he headed back up to McCall.  Saturday we went to his buddy Carter's 1st birthday and we were going to post pictures from the event but Mom must have dropped the camera as she was getting in the car as we cannot find it and it is not at Carter's house or on the side of the street where we parked.  Darn it!  Ryan slept for about 2 hours after we got home (which is good for him) and then got to spend some good quality time with Grandma Pam the rest of the evening.  Today we ran a couple errands and he is now napping.  We hope it will be a good one.  Ryan has been acting good all weekend but his belly continues to expand.  We cannot wait for Tuesday. 

September 9, 2008 - Yesterday we got to the hospital at 7 a.m. for the HIDA scan.  We checked in and then went to Medical Imaging and waited for someone to come get us.  They took us to the Medical Imaging nurses station and we gave the nurse a bunch of info.  She then talked with the radiologist and he came in and met with us.  He said he wasn't comfortable sedating Ryan based on his history, and his fondness of going apnic, without a PICU intensivist or an anesthesiologist doing the sedation.  Neither of those were available until after lunch.  We were like ok so the nurse put the IV in and we headed home about 10:30.  We came back about 1:30 and waited for the intensivist until 3.  While we waited Aunt Lindsey came in with some of her co-workers and visited with Ryan and the RT knew Ryan from our previous stay so he got lots of attention that he so enjoyed.  We headed to Nuke Med and they put Ryan under and got him on the table.  It turned that Mom knew the nuke med tech from her friend Stephanie.  He used to work with Stephanie over at St. Als many years ago.  The tech pushed in the material and we watched the monitor and it worked its way down Ryan's organs.  This process took about an hour and then the tech put in a synthetic hormone, that he likened to eating greasy food, and then we watched that for another 20 minutes.  During this whole time the PI intensivist, nurse, RT and us visited, while making sure that Ryan was staying asleep.  Unfortunately at one point we were so loud that he did wake up and they rushed to get him back under.  We quieted down after that.  But during our visit we got the intensivist to book us a room in PICU for after surgery.  We had reminded him of the pain management that is so important to us.  Once the procedure was done we went back to the nurses station and waited about 20 minutes and then were able to go home about 5:30.  Of course they could not tell us while we were there if the results of the gallbladder were good or not so we had no clue if surgery was still on.  The neurosurgeon called us about 1:30 p.m. today as we were driving to the hospital to say everything was still a go and that we would go to PICU afterwards, which made us feel much better.

We got to the hospital today around 1:45 and got checked in.  We got into pre-op and they said we had to go get an MRI.  So we carried Ryan down to MRI and had to wait as an inmate was just finishing up.  He was escorted 2 police that were in bullet proof vests and had 2 guns each.  We heard one of the guards say when they get to them the inmate is found guilty so we figured he was from the state pen.  They had him zip tied and in a wheelchair.  It is one of those moments when you think why did they send us down now before the guy was gone.  Putting a little baby around a criminal and had there been an incident it could have been bad.  But then the inmate was taken away and get got our MRI done and headed back to pre-op and those thoughts went away.  We met with the usual folks - anesthesia, general surgeon, neurosurgeon, OR nurse, and nurse anesthetist.  Ryan did great through all of it and was trying to be happy and playful even though his belly was so huge.  The general surgeon showed us the CT scan of his belly and the amount of fluid in it was very impressive.  She was hoping that it was a cystic space that they could take down and potentially just reuse the belly and not do the gallbladder but they would have to wait and see.  The neurosurgeon said the MRI of his brain still looked good - like it did back in July so he is still pleased.  There is still some fluid accumulation but that may just be Ryan's baseline.  We'll have to wait until after this surgery to see how things change.  They wheeled Ryan off about 4 p.m. and at 5 p.m. the OR called to say the surgeon's were just getting started (it takes about an hour to get IVs in, intabate, put him under, prep, etc.).  The neurosurgeon came out to see us at 7:30 saying it all went well.  What they were hoping was a cystic space was not so they did go into the gallbladder.  They drained the fluid and he was much smaller.  We then talked with the general surgeon and she said they took out over 700 mls of fluid.  237 mls is 8 ounces so they took out at least 24 oz - that is a lot of fluid in that little belly.  She said his belly was all wrinkly like he'd just given birth but that would resolve over time.  She said his adhesions looked way better than they expected and she gave us a picture that we will post soon but our printer is having issues scanning tonight.  If you remember that picture we posted last time it was all web like, this time it was much smoother but irritated looking.  She said once the CSF is out of the belly and it has some time it should heal up nicely.  We then went to see little man.  The difference in his belly is amazing.  It looks so good.  They left him on the ventilator for the night so they can manage his pain and keep him sedated.  While we were there they would give him something and within 15 minutes he would act up and need more.  He was definitely going to keep his nurse busy tonight.  He also started moving his head and did a good job at pulling the ventilator tube out a little as it was not secured down with a neobar - it was secured down with tape so he figured out quickly that moving his head and using his tongue he could get it to come out.  They fixed that problem.  They finally had to give him something to sleep and he was finally asleep before 9 p.m.  The plan is to pull him off the ventilator in the morning and then see if they can get him to take some food.  If all goes good there we hope to be kicked out to the oncology ward late tomorrow or maybe Thursday morning and home by Friday.  We're very happy he is being taken care of by a nurse that knows him well tonight so we felt like we could come home and get some sleep.  We are so excited to get some solid hours of sleep tonight and then will be back to the hospital in the a.m. 

On a side note - Mom's lost camera has been found.  It appears she did lose it while getting into the car when we left Carter's birthday Saturday and someone picked it up.  They posted posters in Carter's subdivision and his parents called on it today, described it and went and got it and verified it had pictures of Ryan as well as Carter's party.  How lucky is that?  There are still good honest people in the world!

September 10, 2008 - It is about 3:15 p.m. and Mom just ran Dad home so he could take a nap before work so she thought she would update.  Ryan had a good night.  They kept him heavily sedated so he would sleep and he did well.  The unfortunate thing is he has such a high tolerance to these drugs that they have to give him so much for it to work.  Stuff that should normally knock a little guy like him out doesn't.  It only lasts for 5 to 15 minutes.  It is crazy.  We got there about 8:30 this morning and he started acting up.  Crying and unhappy about the tube.  They had to give him something to settle him down and then of course the doctor was ready to pull the tube out but Ryan wasn't ready because of the drugs they just gave him.  So we waited until about 10 a.m. and then they pulled it.  He of course was mad and let us know it for quite a while.  Then we couldn't get him to settle so Mom grabbed him and cuddled with him and he finally settled down when it was quiet and the fishy channel was on.  Unfortunately the pain meds they give him also can cause itchiness so he was rubbing his nose like crazy - oh he was so bothered by it.  It also could be because of the amount of oxygen he is getting because he was on 1 liter.  Finally he settled down and slept for quite a while but then woke up itching again so they gave him a drug that can help with the itchiness and it seemed to work a little.  Mom put him back in bed and about 2 p.m. Ryan started to seem like he was coming off the heavy pain meds and starting to feel better.  He was starting to kick, play and smile.  The plan for the rest of today is start him on some Pedialyte around 4 p.m. and see how he does and then work over to formula.  They are also going to start Tylenol with Codeine about the same time to see if we can get rid of the need for high powered drugs and get rid of the IVs.  If all goes well this evening we will move over to the oncology unit.  Mom will be staying over night to make sure his pain management needs are met.  Our hope right now is if all goes well we will go home tomorrow afternoon/evening.  We'll update more either later tonight or tomorrow.

Ok so plans changed tonight.  We did not move out to oncology.  The PICU intensivist decided he wanted to watch Ryan over night to make sure he did ok with feeds and pain management.  The plan now is to move in the morning so now we are not as hopeful we'll go home tomorrow.  It may be Friday instead.  Mom did not end up staying the night so she will get one more good night of sleep.  Ryan had a little fussy time while Mom was gone and the great grandparents were watching him this afternoon so he got another dose of high powered drugs.  When Mom got back he was seeming a little sleepy so she rolled him on his side and patted his rear end and he started to fall asleep.  He would keep waking up so Mom finally put herself right in front of him so he could always see her and he passed out after a few times of closing his eyes for a few seconds, then opening to see if she was still there.  He slept for about 2 hours.  His great aunt Debbie came by and he never even woke up while Debbie and Mom chatted.  When Ryan did wake up he was in a good mood - playing, kicking, smiling until he fell back asleep around 8:30.  Hopefully he will have a good night.  So far he has done well with his feeds.  The first round of Pedialyte went well so the next round they did formula and it also did well.  They did switch him to Tylenol with Codeine late this afternoon so hopefully that will give him what he needs over the other drug (so the itchiness will also go away). 

September 12, 2008 - We got moved late Thursday morning over to oncology.  Ryan has been doing well and feeds have been doing well.  The PICU intensivist had them give Ryan an enema around 11 as Codeine can constipate so he wanted to make sure Ryan wasn't since he hadn't pooped yet.  We changed one poopy after noon and he had another one not long after (so we should have waited).  They were very smelly - boy were they bad - but he pooped so we were happy.  We thought one step closer to going home.  Then while Mom was at work and Dad was sleeping at home the general surgeon came by around 3 and Ryan had pooped again and she made them send his stool for C diff and rotavirus testing as well as changed his feedings to 40 ml continuous each hour because he had 3 loose stools in 3 hours.  Oh my not 3 loose stools!  When Mom arrived she was not happy.  He was doing fine with his feeds and she felt the surgeon was a little premature to be testing for C diff and rotavirus when Ryan had just had an enema as well as change his feeding volume.  The nurses agreed.  Enemas will make your stool looser and it can cause you to have more than one.  So Mom wanted to put Ryan back on the 120 mls for an hour with 2 hours off and see how he did.  If he continued to poop we'd adjust to what the surgeon wanted but if he was ok we would continue with the 120 mls.  Mom had the nurse page the surgeon but it was after hours so we got the on call surgeon.  He said she must have had a medical reason for changing his feedings so he would not ok the change.  Mom then asked the nurse what her rights were - could she override the doctor.  They basically said yes but went and talked to the night charge nurse to make sure.  The nurse came back and said Mom could do what she wanted.  So at 8:30 p.m. we did the 120 mls over the hour and gave him 2 hours off.  He had no problems.  At 11:30 we did the next round and no problems and have continued this process since and Ryan has done great with very little residuals and no poops.  Unfortunately the charge nurse came in around 10 p.m. and said Ryan's C diff test came back positive.  Mom was like no way - he has no symptoms.  For those who do not know anything about C diff it is an bacterial infection in the stool or diarrhea that is very contagious.  It has to do with the good and bad bacteria that you normally have in your colon.  If the balance between good and bad gets off you can get this.  We don't believe he got it from anyone but got it in the hospital - either touched something and picked up the germs or between surgery and the antibiotics he was on caused his to get off balance (we tend to believe this is it) but it could also be caused from his feeding tube.  So they paged the on call surgeon again to see if he wanted to put Ryan on flagel but he said to wait until the other surgeon comes by in the morning - so he didn't seem too concerned about it.  But unfortunately it means we are now in isolation and will be moved out of oncology over to the regular peds (what we call dirty side) if they don't send us home.  Yes we can go home with this.  We just have to be very clean when we deal with poopy diapers - wear gloves (which we always do) and disinfect areas it could touch and dispose of the diaper properly and good hand washing afterwards.  What is odd is Ryan has no symptoms.  These are fever, abdominal cramping, dehydration, pooping 20-30 times a day (diarrhea).  He may have some abdominal cramping but this could also be because of the surgery he just had.  They say he could have it a few days to months and he may be put on medication for it or may not.  So now we wait until the general surgeon comes to see us and unfortunately she is in surgery until 1 or 4 so we have no idea if we will see her in between cases.  So where she may not be happy with us for changing her orders, we're not happy with having to wait all day for her when we could be at home right now. UGH!

On a side note, Ryan's Great Great Uncle Don (Great Grandma Betty's brother) is very ill and in the ICU a floor below us.  We know may of you pray for Ryan, today we sure wish you would say a prayer for Don and his family.

It is 4 p.m. and we got home with little man about an hour ago.  The neurosurgeon came after we did the first update today and he discharged us on his end.  Around noon we had the nurse page the general surgeon and she said we could go.  Boy we wish we would have paged her at 9 a.m. - we could have been home hours ago.  It sounded like she was not pleased with us for changing his feeds but oh well.  Had we got to talk to her yesterday she may not have even changed them.  The neurosurgeon wants Ryan's stool retested as he didn't see any signs from Ryan that he has C diff so he thinks it might be a cross contamination issue.  The nurses also don't see any signs and don't believe he has it.  We also want another test so Mom and Dad get to scoop some of Ryan's poop into a cup and run it up to the Meridian hospital to have it tested when Ryan poops again.  We'll do whatever to be home.  Ryan is acting great and appears to be feeling great.  We do still think he is sore and hope that will subside in a few days.  He is currently playing with Great Grandma and Great Granddad - jumping and having a good time. 

September 14, 2008 - Ryan has done very well since returning home.  Friday night the Great Grandparents came by and later Grandpa came by and with both he started playing and having a good time.  With Grandpa, he had a poop (first one in 28 hours but not enema driven) and it is still loose but as the days have gone by they are starting to firm back up.  He has only been averaging 1 to 2 poops, which is average.  We still do not believe that he has c diff but with the poop with Grandpa we took a stool sample.  We dropped it off at the lab Saturday afternoon and will wait to hear what the results are (hopefully will get tomorrow).  Saturday we did not go to the BSU game sine Ryan is recovering still.  It was nice to have a lazy day - lazy weekend.  Ryan took some great naps this weekend, that we are hoping will become routine.  He has always been a power napper but maybe now he is feeling well enough to want those naps.  We'll see.  During the night he has been getting into such a deep sleep that he is setting off the low heart rate limit on the apnea monitor.  It is not like he is just setting it off once, it is like every 2-5 minutes for an hour and then he'll quiet down for a few hours and then start up again and then settle down.  Mom and Dad were up a lot Friday and Saturday night.  We will definitely be checking into getting this rate lowered on Monday.  The home health nurse came out yesterday and checked Ryan and his belly measured 51 cm (it was about 57 pre-surgery) and he weighed in at 22 lbs 15 oz (he was 24 lbs 7 oz the week before).  To Mom and Dad he is so much lighter and a much smaller kid - it is such a noticeable difference.  We think he still has some periods of pain but we're keeping the Motrin on board to help with this.  Today we put him in his Seahawk jersey that we took pictures of last Sunday and it is quite a difference - he definitely fits it much better now.

September 18, 2008 - Ryan has had a great week.  He has been napping so much better and at night he continues to set off his low heart rate setting on the apnea monitor because he is in such a deep sleep.  We meet with our pediatrician tomorrow morning so hopefully we can get that adjusted.  We really think he feels better.  Ryan seems to have slimmed down more this week and Mom thinks he has changed in looks.  He weighed in yesterday at 22 lbs. 5 oz. and his belly size is down to 49.5 cm.  We will have to watch his weight because if he doesn't gain like he had been we may have to up the food intake.  We are starting to think that all the weight gain from the last two months has been fluid buildup and not true weight.  He has been big into snuggling and not wanting Mom and Dad out of his sight for very long.  It takes a while before he will let us put him down so he can play with his toys.  (He is so spoiled.)  We got the results today that the c diff test (from the stool provided to the lab last weekend) came back negative - we knew it.  We believe this test more than the last one as Ryan still shows no signs and only stools 1 or 2 times a day and the stools are back to their normal consistency.  We have not had a lot of luck feeding orally this week but the new physical therapist had a great workout with Ryan on Tuesday where he was not gagging or refusing her finger in his mouth - very desensitized.  She even commented on how much looser his muscles were all over.  Mom immediately tried to feed him solids after his workout hoping capitalize on that desensitized mouth but it didn't go as well as she hoped.  He took the cereal for a little bit and then was like I'm done lady.  Dad has been working with him sitting up and we're getting closer.  We got the hearing aid for his left ear on Tuesday.  They want to try one ear just to see if it makes a difference.  We had the ear mold made in BSU colors and it looks pretty cool as you will see in the picture.  Ryan has done better than we expected and has only pulled it out once so far and for the most part leaves it alone.  We have not determined if he hears any better with it.  His other physical therapist thought she noticed a difference today when she was working with him.  We will definitely be monitoring it as we have to go back for a test in two weeks and they will want to know.  We continue to work with him but haven't been pushy this week as we're still letting him have recovery time but this weekend we plan to get back hitting the feedings.  Feedings and sitting up are our goals right now.

September 21, 2008 - Ryan continues to do well.  We think he feels the best he ever has.  We had an appointment with the pediatrician Friday morning where he weighed 22 lbs 12 oz so he is going back up.  His length was 29 1/2" which the pediatrician was very happy with as she said that bumps him up into the 10th percentile now for length (instead of 5th).  We got a referral for a dentist and will be getting that setup very soon.  We asked about when we can turn the car seat around as we are hoping by November but the pediatrician said the new recommendations are 30 lbs so we may be waiting longer than we want (I believe right now they are 1 year or 22 (or 25) lbs).  We had decided to wait until his adjusted age hoping his head strength will be really good but now we may be waiting longer.  Hopefully he won't get too much longer as his poor legs seem cramped as it is.  Friday evening Grandma Pam came up and babysat Ryan as Dad met Mom after her work golf scramble for the dinner & awards where Mom's team placed 2nd.  Grandma Pam had a wonderful time babysitting and said instead of trying to entertain Ryan he entertained her.  Saturday Mom, Ryan, his buddy Carter and his mom Kris were to do the St. Lukes Women's Fitness Celebration walk.  It was raining and a thunder & lightning storm when Mom & Ryan headed downtown.  We met up with Kris & Carter and got to the lobby of Mom's office building and waited out the storm to see if it was going to get better for us to walk or if we were going to have to bag it.  Mom didn't have a rain cover for the stroller (but she bought one today for next time) so we didn't want Ryan to get wet and sick (the last thing we need) and with the lightning neither Mom or Kris were going to put the boys out in that.  We decided to bag it and instead headed to the outlet mall and did some shopping at the Carters baby clothes outlet.  Then we each went home and later Carter and his parents came over for the Boise State football game.  It was so cute because the boys were dressed basically alike and we hadn't even planned it so we put the boys on the couch to get photos.  We had a great time and Boise State beat Oregon so Dad and Carter's dad were in a good mood.  Later Saturday evening we went over to the Great Grandparents house and Ryan had a ball jumping and playing.  Today we ran a couple errands and went over to the Great Grandparents.  We have not got very far this weekend with feedings but Mom felt like today we made progress with eating with his eyes open.  Ryan was kind of tired so Mom took him into his room and was rocking him and put the bottle up to his mouth (while his eyes were open).  He wanted it in his mouth, never gagged and chewed on the nipple.  Getting some formula surprised him at first and so Mom had to be slow with it but at one point he did try sucking on the nipple but then realized he didn't want to do that.  But Mom was able to work with him for a bit and it was the best progress we've had with his eyes open in so long.  We will keep working with his eyes open but also try to work with his eyes closed.  Like we said above we think he feels great so we really want to start working him.  On a sad note, we lost Ryan's Great Great Uncle Don this evening.  Please say a prayer for Don's family.

September 28, 2008 - Ryan is still doing great - feeling the best he has.  He has so much energy and is just so darn cute.  Earlier this week he was the least defensive with his mouth that he has been in a long, long time.  Mom tried a bottle in his mouth while his eyes were open and he let her, he chewed on it and once in a while would take a suck.  Of course he would do the oh no I'm not supposed to do this and stop after one suck but he would not push the nipple out of his mouth and would continue to chew/suck for quite a while.  It was the most progress we have made and we're very encouraged!  We have new exercises we're doing with Ryan in regards to crawling, which most of the time he does not like but for the most he tolerates it.  We've been working on sitting up but of course those hamstrings are still tight.  He is at the point where if you hold him up in a standing position he will take a few steps.  We have to work on having him stand flat footed though as he loves to stand tippy toed.  Friday we took him to Great Great Uncle Don's funeral.  Mom made sure to be put at the end of the row so she could duck out with little man should she need to if he started getting loud or restless.  He just sat on Mom or Dad's lap and did wonderful.  Every now and then he wanted to get up and jump but Mom wouldn't let him.  A couple times he talked but quieted right down.  At the end he got hiccups and everyone could hear them.    It was a very nice service and there were so many people there, it was standing room only.  We then went to the graveside at the Veteran's Cemetery.  Ryan had been asleep on the ride out there and we debated on having someone stay in the car with him or taking him.  We took him and he woke up and did ok through the gun fire but the bugle started he got upset.  Dad quickly got him to quiet down.  Then we headed to the reception and he enjoyed all of the attention.  He got to meet many family members that had only got to meet him on this website.  He got passed around and towards the end of the reception fell asleep in cousin Christina's arms.  Mom and Dad were so proud of how well he did.  Later that evening Grandma Pam and Grandpa Eric watched Ryan while Mom and Dad went to dinner with Chuck.  They had brought Tucker with them and at one point Tucker forced Mom off of the couch so he could be up there with Dad, Grandpa and Ryan.  He gets very jealous and there have been many times when he forces Mom out of her seat so he can sit next to Dad.  He will literally use his legs to push her away.  It is rather funny.  Saturday Ryan made his first trip to Denny's and then watched football the rest of the day with Dad and Chuck.  Saturday evening we went over to Great Grandma & Great Granddad's for Great Grandma's birthday.  He got to spend time with both sets of Great Grandparents, Grandma & Grandpa and Aunt Lindsey.  He had a blast, as did the family, until he was so tuckered out that we put him to sleep in the Great Grandparent's bedroom.  He did not like being woke up to go home but went right back to sleep when we got home.