Happy anniversary blog and so long for now

Today marks the one year milestone since I started blogging on Rylan. One year ago today we were very worried about our little boy and his future. I would lay awake all night with my heart pounding, worrying and praying that Rylan would be okay. It was so scary…..the future, each day, each doctor’s appointment. Today one year later things are so different and so much better. 

As crazy as this might sound this past year has been the best year ever. The past for us is not defined by one event, but rather it’s defined by so many all mashed together. The downs are what allow the ups to be so much better than they use to be. Rylan was sick so many days last year and without those sick days I would never appreciate the healthy days as much as I do today. 

The progress this little boy has made in 12 months is outstanding, he couldn’t be doing better. One year ago today we were trying to teach him how to crawl in physical therapy today he is running. One year ago today we were trying to teach him how to sign “more” in speech therapy, today he is signing and saying  “more”. One year ago today we were trying to teach him how to pick up a cheerio with a pincer grasp in occupational therapy today he can stack cheerios. The list goes on and on and on, the progress is endless and we are so proud.

This brings me to the goodbye. We could never thank you enough for the support you have given us. The comments, the phone calls, the texts, the emails and the prayers meant so much to us. Not having to tell every doctor appointment to each of you separately was so nice. Our situation was tough for us to handle and it is all relative, it has given us a new found respect and love for the simple things. It has given us the deepest sympathy for all of those families out there that are fighting horrible battles every day. Our troubles were so small compared to what so many go through every single day but sharing it with others and receiving support made it better.  I will stop updating this blog hopefully forever because our life is good, Ry is great and my time and your time should be spent supporting others who need a little extra love today and tomorrow.

XOXOX

The Rasmussen’s 

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)