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.

Gastroenterology Update

We had our visit with the GI doctor on Tuesday morning. Rylan had a blast in the waiting room playing with the toys but disliked the exam room mucho. He was not a very cooperative little boy, we will leave it at that.

The doctor had some blood work done to look at how his liver functions and to test him for celiac disease. We just got the results back now. The liver blood work all came back normal; things are working as they should. The celiac testing is a panel of a few different tests, one of the tests called IgA, it showed Rylan was deficient. IgA is an antibody, so it actually helps to understand why he is sick all the time with colds and what not, he can’t fight things off. So anyway when this result comes back as deficient it basically alters the rest of the results so they are no longer accurate.  That means they can’t tell us anything about the results on the rest of the celiac panel because they might not be accurate.  This means…are you ready for it……Rylan has to have his intestine biopsied. So back to Children’s we go and he will be put under, scoped and the doctor will take a little piece of his intestine out to tell us whether he has celiac disease or not. IgA deficiency is linked to celiac disease but only around 4%, however the other factors of his size, family history, health history brings the percentage up.

This is not yet scheduled but we are excited because the other doctor has been wanting an MRI of his pituitary gland from his low growth hormones. I told her the other day it will not happen until December, per the neurosurgeon unless she thinks it is really necessary. She came back and said that is fine….BUT she needs a growth hormone stimulation test done on him soon. I just scheduled it and I would rather poke my eyes out then experience 4-6 hours of drawing blood every 30 minutes on a little boy who has not eaten or drank for 24 hours. Now I get to tell her she can have her MRI and we can cancel the stimulation test.  WOOT WOOT

HAPPY FRIDAY HAPPY WEEKEND

This was him laughing before things got rocky in the exam room.

T

Happy Mother’s Day

We had our appointment with the neurosurgeon this morning, another fabulous doctor from Gillette’s. It was on the books for 6 months so it was a long time coming. Our neurologist wanted us to meet with her to discuss the MRI he had back in December. They wanted to provide us a better understanding of the images and discuss the unique areas in detail. If you recall from the MRI there are two areas of concern, one is referred to as heterotopias (gray matter in an area that shouldn’t have gray matter) and the other being a chiari malformation (crowded area I have talked about in the past)

1.      Heterotopias – there is nothing that can be done here, it is something that has been discovered from the scan. It is a reason for seizures/epilepsy. We have not had any additional seizures or unusual behaviors, but should more seizure activity present itself we will talk about getting Rylan on an anti seizure medication. The Neurologist thinks there is a good chance we will see more, but there is also a good chance we won’t see more. No active plans regarding this finding, just knowledge for us to be prepared for.

2.      Chiari Malformation – this is the most concerning area in Rylan’s brain. It consists of a downward displacement of the cerebellar tonsils through the opening at the base of the skull. This displacement  (crowding) can cause obstruction of fluid. If obstructed it can cause headaches, fatigue, muscle weakness in the head and face, difficulty swallowing, dizziness, nausea, impaired coordination, and, in severe cases, paralysis. Rylan’s chiari is very mild; it could improve over time or worsen. As of today the surgeon would not operate on him as it is not causing any problems. Should it get worse Rylan could begin to experience the above side effects and we would need to have surgery to open the area up. Previously we were told we would have another MRI in 6 months but today it was decided that we will wait a full 12 months to rescan and compare the two images. Being put under at his age could cause other issues so since there is no urgency from the surgeon we will have the 2^nd scan in December, unless something happens before then.

Good appointment, good news, much to be grateful for today and every day. This is such a lovely follow up to Mother’s Day.

Tomorrow we see an old doctor friend of ours, one Rylan met when he was just a few months old. One that I consider a favorite because he helped control his reflux when he was a baby. We are headed back to the GI for some testing and discussion on the liver, growth hormones and who knows what else….just crossing our fingers for no more referrals.

Rylan is doing fantastic in big boy school.

1st day jitters

Knock em dead big boy!