Saying goodbye never felt so good

Another long stretch with no blog post which means another long stretch of good news and good development for Rylan. This week feels like we are reverting back to one year ago when we averaged 4 -5 doctor/therapy appointments a week. Luckily it’s just a coincidence that a few follow up appointments are landing on the same week. Grateful for a week like this so we can take a moment and reflect on all the wonderful progress we have made in a year.

Yesterday Ry had to go back to the ENT, after 4 rounds of antibiotics and lingering ear infections we needed the specialist to take a peek. He found that his ears are clear and that one tube is missing (again) but the tube left a mark much like a hole so the draining is happening without the tube. GOOD NEWS! He said to keep doing what we are doing but next time he has an infection bring him to the ENT so he can better investigate the infections and decide whether we need to look at the adenoids coming out. We are hopeful things will improve.

Today was a trip back to the Amplatz U of M to see the metabolic specialist.  If you recall she was the one we were referred to for the fatty liver. She wasn’t concerned with the fatty liver once reviewing the ultrasound but she was concerned with his low growth hormones and deficiencies. She was the first doctor to label Rylan as failure to thrive/grow L.  She referred us to the Gastroenterologist because she wanted Rylan tested for Celiac’s. At todays follow up we let her know her recommendations are paying off. She reviewed his history and was thrilled to see how many changes Ry has made in 6 months. His growth has improved in all areas, she believes this is a result of his gluten free lifestyle. She requested the same labs drawn today as we had six months ago, she will compare and if there are no changes or only improvements we will say goodbye to her forever. YIPPPY…no offence she has made a memorable impact on his overall well being. He currently sees 8 specialists for a wide range of reasons so removing one of them makes us do the happy dance. Hoping by the end of next year we will be down to at least half of them.

On that note here are a couple recent photos of Rylan and Cece, he is one happy, healthy, silly, growing boy.

Good Stuff

I keep getting asked how Rylan is doing, followed by“you have not posted anything for a while” reason being is that Rylan is doing fantastic. He is the happiest he has ever been, full of spunk and silliness….he even started throwing tantrums. We were thinking he would not be the type to throw himself on the floor and cry when he doesn’t get his way, WRONG! We have been told this is a great developmental milestone so hooray for meltdowns…..I guess. So when you hear nothing just know that is because everything is great.

Rockin 2

Better late than never, he is almost 2 months into being two but who’s counting. Time flies, I can’t believe this little boy is already two years old.

Since we last talked Rylan has had the stomach flu, eye infection, sinus infection and a nasty cold. However he is currently in a great heath status…..I should not type that because school will probably be calling me within the next hour…knock on wood! Anyways you can see one thing that is not improving with Rylan is his immune system. Being deficient in IgA it is possible it will never improve which means I will need lots more therapy on how to handle sick kids while keeping the anxiety level down. It really is fitting that I end up with a kid that is sick all the time because when I was little….or I should say my whole life my phobia has been sick people.  If someone was ill I would go into an extreme panic attack. I guess it is time for me to get over my fears and there is no better way than having a kid that is sick every other week.

We went for his 2 year check up on Friday and had a perfect appointment, minus discovering an ear infection. Our Pediatrician was so impressed by Rylan, she didn’t even recognize him. He has FINALLY made it on the growth scale at a whopping 4% for height and weight, so exciting. She thinks that early intervention has been huge for Rylan and all the therapy and awareness we have had has allowed him to improve in all areas. I let her know we think Rylan has so much more energy and has been so much happier lately and she thinks it is from his gluten free diet. She said she saw it happen to another little one the same age as Rylan. I am not sure if it is really the diet or not but we are loving this newly energized very silly little boy.

We need to get some more appointments scheduled to revisit the low growth hormones and enlarged liver, more details on that later. For now we are having lots of fall fun.

Two thumbs up

Things have been really busy so I am a week late in sharing this spectacular news. After the developmental checkup that we had a couple weeks back the doctor requested our speech therapist retest Rylan to see where he is at on the scale since he first began speech therapy. We started the test last week and he did so awesome, he went from a 74 to a 95. This was just the first part of the test but the therapist was thrilled, Rylan is doing things other kids his age are doing. She was excited to share his results with the doctor. This was perfect timing, I was in a rut of discouragement and this let me see the amazing progress he has made. We are proud of him and can’t wait to see continued progress.

The gluten free diet is still going and we have noticed Rylan having a lot more energy and acting overall happier. Could be a fluke or could be a direct result of removing this from his diet.

Either way all good news for now. This little man is growing up fast.

The G-Free Me

Rylan is spending his weekends doing research on his new lifestyle change, he agrees with most of what Elisabeth has to offer in her book about a Gluten Free diet. He is waiting patiently on the “increase immune system” benefit as he spent another few days sick. He is on a two week healthy one week sick pattern and we all are sick (pun intended) of it. We were able to stay on top of his rather high fever and keep the seizures away so that is great news.

When he got to the section about candy bars he was in complete shock, he really has a lot of options for candy bars and we all know Ry needs some fat on him.

Developmental Checkup

We had our 6 month developmental evaluation with our Gillette’s physician today. She got caught up on all of Rylan’s progress and retested him to see where he stands developmentally. She is so happy to see that he is moving in the right direction even after all the other things happening to him from a health standpoint. It was eye opening for me, I have spent so much time being in the moment with Rylan and watching his progress I have not stepped back to actually compare him to other kids his age.  I use to do this all the time when he was little before we started therapy, lately I just get so excited and focused on accomplishing the tasks at hand or assigned to us from the therapist. I don't even realize that this is something someone half his age can do, instead we do the happy dance and begin to work on the next task. This part was tough for me and made me go home and cry. He is still behind doing things at a 15 month level. It seems the things he was doing for her that I was so proud of are things a typical 1 year old masters not a 2 year old. I will still be proud and continue to live in the moment and focus on the positives . Good thing we only go through this testing every six months, it was kind of depressing. He is moving in the right direction just at a slow pace.

She is not comfortable stopping the search for a diagnosis for Rylan. As we know celiac disease is on our radar and we are changing things to accommodate, but she believes there has to be something else to explain Rylan. I never was planning on blaming all his health concerns and delays on gluten…..as much as I would like to and be done with it. So we will schedule more appointments and get more informing on his low growth hormones, enlarged liver, seizures and get additional genetic testing.

She is going to communicate with our pediatrician to provide next steps, so no rest from the doctors….I had lots of hope that we were on the home stretch.

Today is not my favorite day but the good news is there is always tomorrow and the better news is there is this adorable, lovable, happy little boy. (who loves his sister so very much)

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

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.