Terrible horrible no good very bad night.

Yesterday Rylan came home from school early with a fever, we took him immediately to the doctor to have those ears looked at. The ear infection had not cleared up and was worse; we got more meds and had a nice little evening until…

Mike and I were just about to fall asleep when I said, shoot we never gave Ry more tylenol before bed. After a short discussion we agreed we should wake him and give him some to keep that fever down. Mike went into his room and as he approached him he began a full fledge seizure. In the past we have only seen possible seizure activity it has never been confirmed. He is usually in the postictal state. Last night that was not the case, Mike yelled for me and we began to experience what an actual seizure is live in the moment. It was awful the full body shaking and foaming at the mouth went on for several minutes which felt like eternity. Mike was calm and collective doing and saying all the right things, I was in panic mode doing really insane things while pacing around the house like a lunatic. The ambulance came and reassured us we were taking the right steps. We had the medicine ready to give him but held out as we were not sure it was going on long enough to give it to him. The aftereffects of the medicine are very negative. Mike and Rylan rode downtown to the hospital in the ambulance, he was finally coming out of the unconscious state by the time they arrived to the emergency room or shortly after, I would say it was about an hour. We had the paper work on what specifically the doctor wanted done on Rylan if this was to occur so they went right to work getting all the tests completed. Our neurologist was on call so he was involved last night and will be following up today on results. As time went by he slowly came back to himself and was acting normal again. They were discharged around 4 am so Cece and I drove to get them. She was a real trooper in the car keeping my mind on really important things, here is a quick video (just sound) it made me laugh and thought maybe you wanted to know what goes on in her mind at 4 in the morning when we are going to pick up Daddy and Rylan at the ER.

Once we got them picked up Rylan blew raspberries all the way home happy as could be. They let us know having a seizure like that is equivalent to sprinting a full marathon; it takes a huge toll on the body so he will be tired for a few days. We are now confident the other episodes had this same beginning we just were not in the room to see it, we only have found him when he is coming out of the seizure. His fever was 103 last night when this started so it was a febrile seizure.

So grateful to have gone and checked on him at that exact time. So grateful Cece was sleeping and didn’t come out of her room and see all the medics were gathered around her little brother. So grateful he is in his room sleeping right now at home. So grateful for Mike, who can handle these situations so well. Clearly we are being taken care of really well by the big man!

I will keep you updated on the results from all the tests done last night.

Celebrate

Yesterday was Rylan’s last day of occupational therapy at Gillette’s. He has been discharged as a result of obtaining his goals. The therapist is very pleased with the progress that he has made in the last several months. We have been provided items to continue to work on with Rylan. The only remaining therapy at Gillette’s is speech which will continue.

We also had his 6 month review this morning with the Help Me Grow team. These are the services Rylan gets in our home weekly. We have a teacher, physical therapist and speech therapist that come to the house and provide support and education on how we can help Rylan developmentally. When we first met we wrote a list of outcomes we were hoping to achieve within the next 12 months. As we reviewed them at the half way point this morning I was floored at what progress we have made. When you are trucking along everyday you don’t stop to notice how much things have changed you focus on what is happening in the moment or what should be happening. Today while we were discussing his outcomes it was clear just how far we have come in the past 6 months and it brings tears to my eyes. We wanted him to walk, communicate and understand us and he is doing all of it. We still have lots of areas to continue to work on but the support and education we have received thus far have made a huge impact not only on Rylan but the whole family. Thank you for helping us grow, the weekly support has been monumental in his progress. The rest of those remaining outcomes and new goals better watch out because here he comes.

We couldn’t be more proud of this little man; we will be celebrating tonight going somewhere real nice….like Wendy’s J

Summer Fun

It has been a while since I have posted an update which is a good sign that means I have no updates (bad) on Rylan.  The only health update is that after a bad ear infection he lost one of his ear tubes. We are lucky enough to be able to add the replacement tube surgery onto the events that take place one week from today at Children’s.

Besides that Rylan is having a great summer, here is some pics to prove it.

Beach Time

First movie at the theater



Learning how to ride bike (note: the helmet is on the wrong child, oops)

Having my sister slave away so I can relax in the car

Loving Elmo

Fun Fun Fun

The appointment for the scoping procedure has been scheduled for July 2^nd at Children’s. We will confirm he doesn’t have Celiac and any other digestion issues, we will have an MRI of the pituitary gland and now we will also get the brain MRI done that was slotted for December to recheck the chiari.

Rylan was home with a gross virus the better half of last week, he was not feeling bad just running a fever and doing unusual things like falling asleep on the couch at 10 am.

Once we overcame that fever we were out and about having all kinds of fun, below is a recap in photos.

Pet store

Grandpa’s Boat

Arcade

Playground

Cece Time

Hope your weekend was stellar.