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.