Let there be noise

Rylan’s tube surgery was successful, here is a recap in photos:

Arrived at Children’s at 6:30am, Rylan got dressed in his scrubs and was in good spirits.

He had some play time in his crib.

Then he got hungry and crabby and headed into the operating room to be put under. The doctor came out 15 minutes later and informed us everything went well. He has another double ear infection and had lots of fluid in his ears. The fluid is removed and the medication should clear up the infections.

Rylan joined us a few minutes later as he slowly woke.

He then got the green light for beverages and pounded a few cups of water and apple juice.

After his vitals were good he graduated to cheerios and got dressed and we hit the road. He is doing wonderful, acting happy as ever.

All eyes on the future

About 12 months ago Mike was in urgent care with Rylan again, with an ear infection or strep or something that required yet another doctor visit. The doctor, who we had never met before said to him “you have had his eyes checked right?” The tone of voice the doctor used to ask the question sounded as though we were idiot parents for not having done an eye test. So the following week I took it upon myself to head into a pediatric eye clinic. It was not as though we hadn’t noticed his lazy eye from time to time we just assumed, per our pediatrician it would eventually strengthen up and fix itself.  So as we headed into the clinic for a look at his eyes, I was thinking he would be patched up for a few weeks to strengthen up that eye. But as luck would have it Patch Adams was not the name or look Rylan was going for. Rylan was going for a more studious look. Shortly after we arrived Dr. P let us know Rylan was EXTREMELY farsighted. She put his vision over my eyes and it was a blurry mess. The poor little man had spent the first several months of his life hardly being able to see anything. When his glasses arrived and we put them on him his lazy eye was immediately cured, and he instantly fell in love with his glasses. This photo captured by our daycare provider Sue just days after getting the glasses pretty much speaks volumes for Rylan. This photo is hanging in the eye clinic so everyone can enjoy how sweet he looks in his specks.

Hearing about Rylan’s vision problems was tough at the time, he is so young and it just seemed so unusual. I guess everything is relative because now I laugh at the anxiety I had of him having glasses. He took to them so well and has made so many amazing changes since he discovered the gift of sight. He evens plays a perfect Waldo

Today we had a check up at the eye clinic, he has been wearing glasses since last May and we had not been there for 6 months.  Dr. P explained today that typically kids his age with vision issues tend to worsen before they improve.  Rylan however has gone against statistics…..for the better this time and his eyes have stayed exactly the same. Not worse, not better!  This is more wonderful news for us for a few reasons. 1. His eyes are not getting worse 2. We don’t have to buy more lenses and 3. WE DON’T HAVE TO BE SEEN FOR 12 MORE MONTHS!!!!! Yes!!! That means one less doctor to see for 12 months.

When he was getting sized for glasses Dr. P spent some time with us talking about how to handle Rylan rejecting glasses.  She said he will probably rip them off and throw them across the room; she was giving us tips on getting past these trying times. I had to show her this video when we went in today, clearly the glasses are a high priority for him and throwing them has not been a problem for us.  

Tomorrow is the big day for tubes if we can make it another few hours healthy (we have to cancel it if he gets sick, track record is not in our favor) fingers crossed and prayers needed.

And the (some) results are in…..

Our weekend started out with a bang when our neuro-developmental doctor called to let us know Rylan’s first round of genetic testing results were in……….DRUMROLL…….the genetic disorders and/or strange chromosomes from round one came back negative! So this is a big sigh of relief for us, and one that totally threw me for a loop because I had already diagnosed him with about three or four disorders. Yes I did exactly what I am not suppose to do and goggled things like, “my son has a sub-mucous cleft palate what does this mean?? My son also has seizures what does that mean, oh and he is developmentally delayed with a weak immune system.”

Yes we have sat there for hours in the evening self diagnosing him after our doctors have gently then strictly  told us “no surfing the web, no reading things online…JUST WAIT FOR THE DOCTORS to diagnose. Mike is good at following these directions and being optimistic, I however like to be prepared for the worst and then hope for the best. But I mean really, who can do that?? Who really leaves the doctor after hearing something scary and doesn’t go to the internet for relief fully knowing it will only make the anxiety levels rise with every site you visit.

So back in October when the doctor gave us the option to do further testing and get a diagnosis on Rylan or forge ahead with therapy we can admit we wanted to forge ahead with the therapy so we could hold off on hearing an official name of what could be wrong with our sweet little boy. Being told a child has a problem is one that is not easy so we decided to hold off maybe for selfish reasons. God had a different plan and with the onset of other issues we had to move into the invasive testing. This is a good thing, we can now be more prepared in the future for what might happen and watch for possible things that could be very dangerous and possibly prevented.

So when the doctor called it was time for the moment of truth…..the first round of testing was complete and he has passed.  For the past several weeks we have had lots of uncertainty waiting for this phone call and I was sure we would get some answers but we are still without any and without any genetic disorders so far! More blood work will be taken when he goes in for his tubes so more testing is still to come.

Really Sucky Virus (RSV) has left 100% and Rylan had a great weekend, healthy and happy. As many of you know about this time of the year when you have a week or a weekend when everyone is healthy it is a true success, you can actually be grateful for the little things.

One major milestone I will share if you promise not to make fun of the of the producer/director of the video. This should really be only audio but I am not the least bit technical so ignore the video portion (of our drive to therapy) and just focus on the cute little voice of Ry….not to be confused with the loud obnoxious voice of the mother!  We have words from the little man. We have to record him talking because when we arrive to speech therapy he freezes up and is mute.  With his tubes surgery just 8 days away we are thinking he will be able to hear much better and start to talk.

First Post....here we go

I am not a writer, nor a blogger I just need a way to keep people in the loop who want to be in the loop. So we are now blogging, on the one and only Rylan Rasmussen. So the first blog will be a run down on our special little man. We decided to go with the Adventures of Ry-Guy, why you ask??? Well because as we go through the awful, painful events with Rylan each one that passes something really good will peak its head through and it turns into an adventure of happiness and continued progress.

So here we go:

Ry-Guy has been going through a lot lately...or should I say since he was 3 weeks old and he dealt with extreme colic and reflux issues which I am happy to announce have been put to rest.

Rylan has been diagnosed with developmental delays, he is getting ongoing therapy in physical, speech and occupational therapy at Gillette’s three times a week. He is also approved for a state program called Help Me Grow, he has just completed the evaluation and has started weekly ongoing therapy in our home. He received little ankle braces so he can get strong enough to walk, since getting them one month ago he has made drastic improvements physically, he can walk the furniture very well. So far as a result of all the therapy, we have seen lots of positive progress and are hopeful he will continue to develop at whatever rate is best for Rylan. We had originally decided to start the therapy and focus on that more than working to find an exact diagnosis but some recent events have changed the order of importance and getting genetic testing has begun due to the finding of a sub mucos cleft palate and two seizures that have happened in the past month.

Ry's first trip tp the ER

We had a  brain MRI and EEG done on Rylan, then we met with a neurologist to discuss the results.  He did a thorough check on Rylan looking for any unusual clues from his body. Some features stand out as a little unique but nothing earth shattering.

He reviewed the brain MRI scan closely and discussed the two items that caused concern. The first being heterotopias, he has some tissue/cells out of place and the Neurologist is trying to determine why and how much is out of place. He said this often is sign of seizures and epilepsy, he is not diagnosing him with either but watching it closely. He then talked about an area in the brain called cerebellum and the space around it. Rylan has a smaller space around his cerebellum making it tougher for fluid movement. This area can sometimes can get so crowded the brain begins to swell up and can be very serious. This can fix itself by shifting in a way that allows more movement or do the opposite and make it so crowded surgery would be necessary to resolve. We will have a follow up scan to watch the change and hope it fixes itself. The Doctor provided us with items to watch for like head growing fast or pain in the head as signs to get another scan sooner. We will have another MRI in 4 months if no changes happen, if changes happen sooner we will have another MRI sooner. He shared the information with a neurosurgeon to ensure he is not missing anything else “unique” he agreed with the findings and decided he would like us to meet with him after the next scan, the neurosurgeon believes seizures and possible surgery will be in Rylans future due to the two areas on the scan.

His EEG was done for 45 minutes. His brain movement showed to be accurate for his age. So his physical and speech development is of 9 months but his brain is at a 18 months old!!!!! His EEG showed no signs of seizures! With the second seizure happening last week they have decided it is necessary for another EEG for a longer period of time. We will be admitting Rylan into the hospital to do a 24 hour EEG, that should be the opposite of fun.

Rylan is scheduled to get tubes in his ears on January 31^st, more blood will be drawn for more testing. Rylan has chronic fluid in his ears and has had many ear infections in the past several months.  We are hopeful this procedure will improve his speech as his hearing will improve.

Our next unusual appointments include meeting with a  geneticist so they can examine Rylan closely and a Neurosurgeon to dicsuss the MRI’s. We just had a follow up with the neurodevelopmental doctor after three months and she is very happy with his progress, he has made so many wonderful changes in 3 months.  The doctors at Gillette get together every so often and review cases they have as a group. They look at the scans and paperwork and give feedback. As you can imagine this is a group of highly intelligent experienced doctors. Our doctor let me know today she is bringing Rylan’s information in next week to talk about as a group, we think that is just wonderful

Rylan just got over a case of RSV which had him feeling miserable for a week, even when he is sick he still progresses wonderfully.

So that is where we are at, I am sure I missed some items but this is high level friends. What we need is your prayers to find the answers we need to help Rylan.