Happy 2nd Birthday Ry-Guy

For those of you non Facebookers here is a Rylan on his 2^nd birthday. We have had so many ups and downs this past year but the ups always outshine and wipe away the downs. Here is to many many many more years of happiness. We love you buddy!

Goodbye Gluten

Things have been going great lately, Rylan is 100% himself and healthy again.

We got some results back on his tests last week. He does have what the doctor calls early signs of celiac disease.  Those results paired with things like low growth hormones, small size, vitamin deficiencies and family history has allowed him to diagnose him with celiac disease and restrict all gluten from his diet. This is kind of good news. We know something isn’t right with the little man so perhaps something as simple as removing an item from his diet to see improvements makes us happy. No medications or growth hormones!!  This will be a challenging lifestyle change but nothing we can’t handle. So all you gluten free people, send over the advice or ideas we need them. We have not started this change yet, we are getting our ducks in a row and arms wrapped around the whole process first. Ry has a couple more days to enjoy his obsession with carby snacks like goldfish.

The results of the pituitary gland look normal. The metabolic specialist believes the low growth hormones are a factor in the celiac results. She will have Rylan back in 6 months to retest him, she is confident that this change in his diet will show better test results and growth in Rylan.

Good Things, getting answers and hopefully solutions.

Happy Hump Day!

Done!

Heading home now, everything went well. Results of MRI and Endo later this week. Both ears needed new tubes and were still infected, immediate relief for Ry on that front. He woke up groggy for a few minutes, then did some gaming and we hit the road. He is now enjoying his new friend Grover, snacks and drink and acting like nothing ever happened.

We are in!

They accepted Rylan for surgery this morning, YIPPY!
He has had a very exciting morning the only downer no food or drink. Here is the morning so far. Going over his health history with the nurse, watching and dancing with Elmo, playing with dad, riding around in a fun car, driving the car.

Rylan has always had a dislike for people in scrubs, however today that changed or maybe because of his last week. Doctors, nurses and anesthesiologist keep coming in and introducing themselves with a hand shake to Mike and I. Today Ry has been sticking his hand out to them for his introduction and it is hysterical!
He is sleeping well now, first MRI, then Endoscopy then ears. We should have him back in our arms in a couple hours.

Hanging In There

We are hanging in there as my wonderful Grandma Ryan would say.
We have not heard back from the doctors regarding all the tests Ry had done in the ER, we are going to assume that is a good thing and wait patiently. We took Rylan to Children's yesterday to get a better explanation of this:

Ry accumulated welts all over his body on Friday. With already getting the green light for surgery we were getting nervous and thought we better have them checked out. It is called Erythema Multiforme which is basically a reaction to a medication or virus. The doctor stopped the medication for his ear infection and started him on a new one, she thinks it was a reaction to a virus but wanted to be safe. Both ears are now infected so Monday couldn't come soon enough. If nothing changes we can proceed, if anything happens health wise we cancel. After further conversation at children's we decided we will bring him in as scheduled and let them tell us if he is well enough to go under. Only time will tell and less pressure and stress for Mike and I.

Today he is much happier and seems better all the way around so moving in the right direction.
We will talk more tomorrow, until then feel free to send well wishes and prayers our way.
Here is the man this morning with a sunshine headband and milk drool.

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