A shout out to the Cecenator

Today is my birthday, happy birthday to me J

I am completely overwhelmed with the love pouring out to me this week, I feel so blessed to have so many wonderful friends and family in my life. As I show my gratitude to others one person gets a dedication today.

Yesterday during in-home therapy, Rylan’s teacher said “Cece is really a big helper.” She has not had the opportunity to meet her yet,  but hears many things about her and the way she impacts Rylan’s life. I hadn’t put much thought into it before she brought it to my attention; I guess we had taken it for granted. Mike and I chatted about this last night and we are so grateful to have a daughter and big sister as perfect as Celia.

Our sweet little lady has been on the back burner for majority of her little brother’s life, things revolve around Rylan because they have to. Celia has more than enough love and happiness in her life, she just has to bring her patience to the party…..EVERY. SINGLE. TIME.

It will change eventually but it is what it is for now and Cece has accepted it full heartedly. Celia has this motherly way about her and she has done an unbelievable job helping us and helping him grow and change in such great ways.

So today when Mike was at Gillette’s with Ry and he heard the therapist comment on what a big helper Cece must be I had to announce it, post it, brag about it, because she is so wonderful and we love her so much...especially Rylan!

Like I said before: happy birthday to me J

First Steps….CHECK

Breaking news in on Rylan Rasmussen, he just had his first steps unassisted. This amazing milestone was not at daycare or home as most would expect, it happened at Gillette’s while he was in physical therapy.  

I seriously thought the therapist was going to pee her pants right there on the scene of the event. She ran to share the news with the developmental doctor who came in to celebrate with us. Most of the Gillette team was rejoicing, as we left the ladies at the front desk were even cheering for him. What a start to the day.  If Rylan keeps this progress up he will be dismissed from PT at Gillette’s, walking is his last milestone for PT.

Since I have no photos or videos of him walking I will leave you with one of my newest favorite videos.

Happy Thursday

No news is good news.....

Things are slow and steady in our household, as they say…no news is good news. Rylan spent last week getting tortured by his teeth.  If he was ever “delayed” in the teeth category he is officially caught up with about 7-8 newbie’s.  With the typical teething comes a crabby boy with a fountain of drool, butt rash and a cold, so when I say no news is good news it is all relative. We did a lot of chillin in pj’s over the weekend.

We are glad those teeth came through because this week is a hectic one here is the lineup of doctor visits:

1.       Occupational Therapy

2.       Speech therapy

3.       PM&R (re-evaluation of ankle braces)

4.       ENT (recheck of tubes surgery)

5.       Physical Therapy

In the meantime we are just worrying about things like this….for Cece’s sake J

Peace Out EEG

Rylan was just discharged from the hospital, his EEG is complete and there were no signs of seizure activity during the test.

He almost left with the backpack, then decided he wanted to leave that and the head wrap with the hospital.

We met with the neurologist and he has provided us with a medication to have on hand in case of an anymore seizures. This medicine would be injected into Rylan and would help him get out of a seizure faster. This would be similar to that of an epipen for people with allergies.

Because Rylan acts a little strange the day or day before he has a seizure (he did last time) we will call and see if they can get us in for an emergency EEG right away so the neurologist can actually see the episode.

Rylan continues to stump the doctors on his unique medical problems. The neurologist has scheduled another brain scan in a few weeks to revisit the previous areas of concern and get a better view of his spinal area. This scan is where we need lots of prayers that the crowded area in his brain has resolved itself and made more room for fluid movement, the alternative would result in possible brain surgery.

Back to reality…Rylan has just been dropped off at daycare with all smiles.

Extended EEG…

The night went well, Ry got up and hung out for a couple hours around 3am and then went back to sleep until morning when breakfast was served.

Today he has been backpacking the day away. Had some special visits from family and friends to brighten the long day.

We have good news, after 24 hours of the EEG they see no signs of seizures. This comes with a little disappointing news for us as they have suggested we stay another 24 hours to ensure he has no seizure activity for 48 hours. So another 20 some hour remaining……

EEG continued….

Rylan played for most of the day, eating only junk food and playing with lots of fun new toys.

He got ready for bed and decided to protest, he was not satisfied with his dinner and didn’t think this crib was a good fit for him.

Sissy came to make things all better.

The day has turned to night and Rylan has settled in for the evening, this is him through the video camera I get to watch. So for now mom is on duty wondering if anyone is available for some words with friends….

EEG take 2

Ry started the day with a little 7am therapy at Gillette’s followed up with a quick drop in at daycare to hang with his homies. He has now checked into the hospital for his 24 hour EEG. Dad is on first shift and mom is on second shift so if anyone is looking for him you know where he will be for 23 more hours…..

A is for Achieve!

We received this on Friday from Gillette’s, can you see all the A’s this little man has received on his recent PT evaluation.  Please note one thing has changed since this was documented, he went from PT once a week to PT once every three weeks as a result of his progress!

GO RYLAN!!!