Ryan's August '08 Blog
August 8, 2008 - Things have been going well for Ryan. We've had no doctor's appointments this week - yeah! His 2nd tooth finally cut through and is coming up faster than his first tooth. He has not done much better with eating but hopefully now that the 2nd tooth has cut it will get better. He has been averaging about 30-40 mls by bottle. It is like he just gets enough to coat his tummy and then is like I'm done. He did really well with sweet potatoes the other night (yet didn't do well for Grandma last Saturday) so we'll continue to work there. He weighed in at 23 lbs 3oz on Thursday. Tuesday night we went to our subdivision BBQ. It was muggy and about 100 degrees and he did really well for having not been out in the heat much. Wednesday we met with the lady from the Infant Toddler Program and she laid out the plan that we'll begin working with. We'll get a developmental evaluation in the next few weeks and the PT person they have that is really good at feeding is to start in a few weeks as well. We'll see how things go from there and then if we think we need more help we are to let them know and they will see what they can do. Wednesday night we went to the NICU graduate picnic. There were so many families there - it was a great turnout and we got to see so many of the staff that took care of Ryan. It was really nice to hear that quite a few of them still check our website to see how he is doing. Mom did a bad though as she had her camera and only remembered to use it with two of the nurses. She apologizes to those that loved on him and she didn't get their picture with him. She'll do better next year! It again was about 100 degrees and a little muggy but Ryan did well. He was acting tired for the first part of it and then he got a 20th wind and off he went. The pictures of him with Linette - she had him laughing and wound up - it was so cute! We put him in his jumperoo tonight and he did so great. He held his head up for a long time (he was in it for over 30 minutes) and when you left him alone he started to figure out that he could jump without any assistance from us and he had a good time. We will definitely begin using this more and more. He still hasn't rolled over and isn't sitting up on his own. He is so close to rolling over and he is still a little too tight for sitting up but we're getting there. We just wish we'd see more improvement faster. We thought he would take off after we got home from this last surgery. It is like he is just enjoying himself and taking his time - which we can't blame him there after all he has been through. This next week we will be doing the hearing test again. We again have to put him to be late, get him up early and make sure he is tired for the test. Luckily it is on a Friday and we can let him rest all next weekend.
August 10, 2008 - We had a great weekend. Saturday Ryan's oxygen saturations were doing well that Mom decided to turn him down to 1/32. This is the last step before we take off the oxygen. Let's hope things continue and we can get him off in the next month. He has done well all weekend - satting over 95 at each check. Yeah! We took Ryan out on his first excursion to the mall. We weren't there very long and he did well until we were heading out and then he had enough. We then took him to Costco and Aunt Lindsey's before he passed out on the way home. After a short nap we headed over for a play date with his buddy Carter. Ryan was very curious and was checking out his surroundings but still didn't pay too much attention to Carter. Carter was checking Ryan out. Kris held Ryan for a long time and Carter did not get jealous this time. The boys were entertaining and we had a great time. Ryan ended up getting so tired after dinner that he passed out on Carter's floor. We finally got him home and he went right to sleep. Today we decided to take him to the zoo. We knew he probably could not really care but we thought it would be a good outing. He did good. He had a few fussy periods where he didn't want to be in the stroller so Mom and Dad took turns carrying him until our arms were tired so we put him back in the stroller. After the zoo we walked around the park that the zoo is located in and he enjoyed it. It wasn't too warm and there was a nice breeze so we walked over to BSU and didn't get too far when he had enough so we headed back towards the car. We stopped at some benches to let him out of the stroller and cool off (he is such a warm body). Then Dad wanted him to smell the roses (we were by the rose garden). Just was Mom was getting the camera ready for pictures somehow his knee got up by the thorn and it scratched him and he got very unhappy. We headed home. This evening we had dinner out on our patio and he seemed to enjoy it although he was not interested in eating sweet potatoes tonight. Oh well. Another battle for another day.
August 17, 2008 Ė We had to bump Ryanís oxygen up to 1/16 again. He just couldnít keep his saturations up after a few days. So here we will sit for a while and try again later. Ryan has seemed to be a little hungrier during the day. In the evenings he has been taking about 50 mls (up fro 30-40 ml) letís hope that continues. Dad tried Ryan on bananas this week and he seems to like it pretty well although Mom tried feeding him that on Friday and he did not want them. He weighed in at 23 lbs 12 oz and 29 ľ inches long this week. The home health nurse thought he was doing well enough that she thinks she only needs to come every other week, which we agree.
We had the hearing test on Friday at 1. We had to put him to bed late and get him up early. Mom couldnít get him to stay up late Ė she had to change one of the dots that hold his cannula on his face and he was so tired it was like it traumatized him. He was so upset that Mom let him go to bed about 8:30 p.m. Thursday. He didnít sleep well and Mom was up with him a few times and then he was wide-awake at 4 a.m. Mom let him have a little power nap from 5:30 to 6 a.m. and then we worked hard to keep him up. Great Granddad came over around 8:30 and Ryan played with him for a little bit and then was so tired he fell asleep. Mom let him have a 10-minute power nap and then woke him up. He then proceeded to complain to her for like the next hour. Finally it was time to go to the hearing test.
We got there and they placed the nodes on his head and put the earphones in his ears for the ABR test, which tests the outer ear. Mom held him and when she could hear that there was noise coming through one side or the other she watched for a response from Ryan. When they first started the noise his eyes got big and were looking around. Then it was like it was so constant that it put him to sleep. He fell sleep and throughout the test when Mom could tell they started up in one ear or the other she noticed he would do a little flinch or his breathing adjusted for the startle Ė he seemed to react to it in Momís opinion. The audiologist finished the test and said again she was getting no response from either ear. WHAT??? You cannot be right Ė he reacts to things and he seemed to be reacting to what she was doing. She grabbed another test that checks the inner ear. Last time she got response out of the right ear but little out of the left. This time she got no response out of the right and little out of the left. WHAT??? Mom and Dad were in shock. We told her that he hears things and we started to rattle off what he responds to. We said that it canít all be coincidence that he reacts to it Ė which she agreed. She wanted us to come back another time to do a behavioral test but luckily Ryan woke up and so she said she had time to do it now. Mom & Ryan were placed in a sound proof room and they put earphones in Ryanís ears. Mom was told to get Ryan to point straight ahead and then as the audiologist made noises in his ears she could see if he would turn towards the noise. If he turned to the right he would be rewarded on the TV with a picture. She started doing the test and Ryan would turn but Mom couldnít tell if it was from the noise or just looking around. When the test was done the audiologist said he does hear something. In one ear she had to make the noise louder than normal conversation levels and in the other ear she could do lower than normal conversation levels. He didnít respond to high-pitched noises in either ear. Mom said she had wondered if he could hear high pitches noises because when his apnea monitor goes off he doesnít move but yet the humidifier making a popping noise scares him. The apnea monitor sounds like a home fire alarm going off but much louder and a little higher pitch. The humidifier makes a lower tone pop sound Ė when water hits something warm and pops. Unfortunately the gentamicin and vancomycin that Ryan was on to fight his spinal fluid infections can ruin hearing Ė especially high pitched sounds. We knew it could affect his hearing but at that point it was hearing or his life and we chose to fight for his life.
Based on him failing the outer and inner ear hearing test but somewhat passing the behavioral test, the audiologist said that because of his brain issues it could be that he hears something but the brain does not know how to interpret it. It is called audio neuropathy. It could mean he could hear perfectly or have serious hearing issues. But it could also be that from his brain damage that the brain is dealing with hearing in a different place and they donít know it so his hearing really could be just fine, which we donít know at this point. Their worry is it could cause him problems with speaking if he hears things but doesn't know how to interpret them. We are to come back the day after Labor Day for another test with 2 more audiologists and they will try to fill in some of the blanks from the behavioral test. Unfortunately we are talking now of hearing aids. Is this a dream??? Like Grandma Connie says - he has to try everything out. All of this is definitely not what we were expecting to hear and we are a bit shocked - ok not a bit shocked but extremely shocked. We just donít understand it Ė when you laugh he knows to laugh. He knows what sounds are unpleasant and what sounds are pleasant. When we talk to him from another room it calms him down. Mom, of course, is having a hard time with it. She already feels a tremendous amount of guilt from his early birth and every other thing that happens just adds to it (so you can imagine the guilt is quite large with what we've gone through so far). People have told her repeatedly not to feel the guilt but how can she not? Had her body not broken down he would not have come early and he would get to be a normal little boy just like everyone else we know. It is a guilt she will have forever - one that she will have to learn to live with and every day will try to make up for.
Saturday was pretty low key. We took Ryan for a shopping excursion to Walmart. We went early in the morning before it got crazy and he did really well until the end. We were walking to the checkout when he started to get fussy so Dad took him to the car while Mom checked out. Today we tried to get stuff done around the house and then went to a BBQ. It was another 100 degree day and we sat outside and he did well. When we thought he was getting too warm we took him inside to cool off. We actually put his feet in the kiddy pool and he was ok with it this time and he seemed to enjoy it when we put cold water on his skin to cool him down. Of course he could not hang with Dad outside very much as those two warm bodies together is a recipe for disaster.We donít have much going on this week. We have the appointment with the Infant Toddler Program developmental specialist on Tuesday morning. We are looking forward to this to get a better picture of how far off we are. We know we are very far off and assume he is like a 4 month old. We will see if we are in line with that thinking.
August 18, 2008 - Just a quick note to say that Ryan rolled over on his own today (from back to belly)!!! We are so proud!
August 23, 2008 - Ryan continues to roll over and we love seeing it. It was quite a big deal in our house as you can imagine. Of course it took many days for Mom to get to see it but Ryan gladly did it for the Great Grandparents and Dad. We had the developmental evaluation on Tuesday and we didn't get any of the info we expected. She said she would write up a report and send it and then we would see. His numbers will be low because it is a 0-3 years old assessment with 3 years = 100% or something like that. We'll write more later when we know more. She did say after we explained the whole hearing test that she will request a speech evaluation so if we need to get the speech therapist started we can. His oral feeds have increased this week - most feedings have been about 60 mls or more. He has also been doing well with cereal. We still have a lot of work to do and we're hoping the therapist from the Infant Toddler Program calls soon as we're excited to get this going. So far this weekend we took him out on another shopping excursion and he did the best to date. We tried out our umbrella stroller and we think he liked it much better - doesn't make him sweat as much and he could see better. We hadn't tried it yet because of his head control but he is really doing well with it. This next Thursday we have someone from the Idaho School of Deaf & Blind to come look at his eyes and recommend some exercises or something we can work on him with.
Thank you to those that sent Mom a note regarding her posting about the hearing test. The posting was just meant to let you all in on that this is a tough thing we continue to go through and we still have many bad days. Most are good but as you can understand getting more somewhat bad news can devastate us - especially Mom.
August 28, 2008 - Ryan weighed in this week at 24 lbs 3 oz and is 29 1/2" long. He has been cutting teeth again. Last Thursday night he was fussy and kept Mom up most of the night. She finally had to have Dad come home and help as she was so exhausted. Didn't even think that the fussiness was cutting teeth as Mom had checked his gums earlier in the week and it didn't seem like anything was coming in. Dad noticed Saturday that it was a tooth. Then Monday night Mom thought it was just the tooth that came in on Thursday so she put Orajel on that tooth but boy was she wrong. So now he has 4 teeth. He doesn't care much for you touching or showing his top teeth but is ok with the bottom. One thing we have noticed is his teeth are coming in yellow. After doing some research we found out that some of the medication he was on or if he got too much iron (which he was always low so don't think that is it) could cause this and that this is common with kids like him that have been so sick. It is an enamel issue that a pediatric dentist can help fix. When we go to the pediatrician next time we will get a referral and then make that appointment. Of course the new teeth have interfered with his eating. He did well a few nights ago with green beans and has been taking about 60 mls still on the bottle but since the teething he hasn't been too interested in eating and if he is he is not very coordinated and doesn't last long so he has been taking between 20-40 mls. UGH!
Yesterday the home health nurse came and she thought Ryan seemed much more alert and was wondering if it was because we are almost off of the phenobarb (seizure medicine which can be used as a sedative and also slows development). Mom had just been asking Dad if he thought that a day or two before the nurse came. We were already on a low dose but wonder if getting him down to 1 or 2 mls a day has really helped (where we had been at 6 mls). We currently are at 1 ml in the evening and Sunday night is his last dose and then he is off of it. It just seems since we got to this lower dosage he started rolling over; he is reaching out and grabbing things like Dad's baseball cap or Mom's glasses; and he is learning some things we do with him are games and he likes to initiate them and play them. While he was alert before maybe he had a fog over him and it is lifted. Maybe this is what we needed to really start progressing - we sure hope so!
We met with our new physical therapist on Tuesday afternoon. She came and did an assessment of Ryan and will start working with him next Tuesday. We keep hearing she is good so we hope so! She did mention that the muscles in his mouth are looser than she expected - we know this is a good thing but don't know what it means in terms of getting him to eat better. Today we had the lady from the Idaho School of Deaf & Blind come out and she was pleasantly surprised with Ryan. She said he is doing much better than she expected and was pleased with how he responded to things she was doing with him. She will be working with us every 2 weeks in regards to that pale optic nerve (it's called optic neuropathy) and the shaking of the eyes (called nystagmus). The hope is some of his vision will get better but we won't know what kind of vision loss he will have until later. (When we last saw the ophthalmologist she had said he should see ok but have issues with either peripheral vision or picking out items in busy patterns so we will now see if that holds true.) Great another wait and see what unfolds type issue - just add it to our list of items we will be waiting and seeing on. Late this morning we met with our service coordinator. She will basically be our social worker with the Infant Toddler Program. She will be the one that will help make sure therapies are making progress and getting us services we need. Then late this afternoon Ryan had physical therapy with our current therapist and he was in no mood so she did not get a great workout with him but luckily Dad has gotten some good ones this week.
Boise State football begins this weekend and Ryan will be going to his first game. We are excited to take him and introduce him to our season ticket holder friends that sit near us but we're also excited to see how he does. It could determine how many games he will be going to this year.
Now for our worry. Mom noticed a couple days ago that Ryan's belly had appeared to be bigger so we have begun measuring his belly more frequently and it has increased almost 2 cm in 2 weeks, which is quite a bit since we've been holding steady for about 2 months. This increased size can be a few things - infection, abdomen is not absorbing the fluid from the shunts, constipation or he is just growing. Big range of items but unfortunately we have had this before where it was infection so we are definitely watching this a bit more carefully. Ryan doesn't act like he is sick and he is not tender if you poke his belly but it is a noticeable change to how his belly looks - his nurse and physical therapist both noticed. We called the neurosurgeon this morning to see if he wanted to see us or just to watch for certain signs but unfortunately he was in surgery all day removing a brain tumor on a little girl so we have to wait until tomorrow to hear from him. Mom & Dad are worried. While we don't think it is an infection, we are worried that his belly is not absorbing the fluid (most likely because of all those adhesions) and if this is the case then surgery is in our near future and that will mean the shunts will be placed into the gallbladder, which at this point is our last option. We're praying that it is just a growing stage as we seem to recollect another time where his belly got big like this and it was just how he was growing. Please say a prayer that this pans out to be nothing and that his belly is absorbing just fine. Hopefully we will know something tomorrow and will update before the end of the weekend.
August 29, 2008 - We called the neurosurgeon and for now he wants us just watch Ryan and if he continues to get bigger to bring him in and we'll scan his belly.