Doctor update followed by some yoga

Today was our appointment with the neurologist at Gillette’s, it went very well. He was very pleased to see Rylan’s recent developmental achievements. He said that Rylan walking is a great sign and we can begin to worry a little less about his developmental delays.

The doctor said that as we continue meeting different specialists we might see less of him. He thinks the recent discoveries made by the geneticist are very interesting and is looking forward to learning more after our appointment next week.

As he mentioned in the past he doesn’t think Rylan is clear from future seizures. We are to follow up immediately with any unusual activity. The neurologist will document specific instructions / tests for other doctors that might care for him during a seizure or illness.

He is still adamant on us getting another scan/xray done on Rylan and meeting with the Neurosurgeon. He mentioned that although his findings might be mild he has had cases where precautionary measures could have prevented worst case scenarios. We are not willing to take these risks so we will take the doctors recommendations and follow up / watch closely.

He will continue to research and follow Rylan’s case closely. Our next appointment with him will be in 6-8 months unless things take a turn for the worse, we are all hopeful that won’t be the case.

Rylan learned down dog today, it is silly so check it out. We have not been to PT in several weeks so I am certain his walking along with down dog on demand will earn us some gold stars next week.

Have a great weekend!

Progress

Rylan has made unbelievable progress in the past month. I think when we were on vacation his grandparents were putting fertilizer on him because over a week’s timeframe he turned into a big boy. He walks on his own, reads books on his own and is doing a wonderful job communicating to us with sign language and gestures.

He has been healthy and continues to impress his therapists and teacher, we are very proud of him. We have some big appointments approaching so if you are following along I will give you an update.

1.    Neurologist 3/30 -  recheck and follow up since last EEG

2.   U of M Metabolic Doctor 4/4 - we will get more info on the liver ordeal I mentioned a few weeks ago, we are anxiously awaiting this appointment.

3.   Pediatrician 4/11- 18 month checkup, time to impress the doctor with all the progress since Ry’s 12 month check up and maybe even get on the growth chart.  (milkshakes for breakfast, lunch and dinner until then)

4.   Neuro-surgeon 4/27 – first time appointment to follow up on areas of concern from the MRI and have an x-ray done. (This appointment scares us, I am sure the doctor is very nice but communicating with someone who does surgery on brains is not taken lightly in the Rassy household and I wish we didn’t have to meet this doctor)

Here is the big boy I speak about

Mom, things are perfect....Don't worry!

I am doing great and having fun with Dad. I can't wait to get spoiled rotten by Gpa, Gma and uncle B. I miss you and Cece and have been texting, tweeting and FBing about it since you left, haven't you gotten them??? The weather is great here in Minnesota you guys picked a bad time to go on vacation without me, jokes on you....love you!

Hey look at me everyone…HURRY

Case not cracked...but maybe a little closer

Today was our first appointment with a geneticist.  Our developmental doctor referred us to a great doctor at Children’s. We went for a 9am appointment and ended up staying all day long. The morning started with the standard weight/height and common questions on Rylan’s health history. Then we spent some time with a genetic counselor who asked questions specific to our health and our family health history. She drew a pretty chart and took close notes on where we came from. We realized we might need to keep better track of our families health history because we answered a lot of questions with “um I dunno” so family we will begin interrogating you soon.

She looked him over closely and decided she wanted a few tests done. First she noticed he had a large belly, maybe swollen or maybe just Rylan. It made me laugh, any of you that knew Cece at that age would think that is just the toddler Rassy figure. We sometimes got stopped in public as people asked about Cece’s extremely large belly and normal body, what can we say our kids enjoy food.
We tried to kill time with no food or drink for Rylan, it worked for the most part. I use to not allow my kids to touch toys at the doctors or hospitals because I am a germ freak. That has since changed because desperate times call for desperate measures, now they can even play with other patience’s patient' s:)

So the first test was an ultrasound, he was thrilled. They looked at his belly good and found out the largeness is gas, must have been all those beans for breakfast.  He was a very good sport for this one, even a little peek a boo.

They did find that his liver is a little abnormal or off in texture. We are still unsure specifically what that could mean but the doctor thought it could, maybe, possibly be an answer to the Rylan case. It could link to his small size, illnesses and seizure activity. This could also be a result of his delays. I am not going into very much detail because we don’t have a lot of information. We have been referred to see a specialist in this area at Amplatz, the U of M’s new Children’s Hospital to have a second opinion, more tests and learn more about it if necessary.

After that we went to have some blood work done. Ry thought this was the low of the day. We are waiting on those results. All his previous blood tests as of today have all been negative.
We proved to Rylan that a little blood draw is not so bad when they started strapping him down to a table for some xrays. Yep, this was the new low of the day.  They took several xrays so they can see ALL his bones closely; those results have not become available.

It was a long day, it came with a possible answer but definitely not set in stone. These doctors are all stumped but certainly covering their grounds. Children’s Hospital reviews cases weekly and the doctor today let us know she wanted to bring Rylan’s case to the table similar to what they did at Gillette’s. I should mention we only hear things back if some suggestions are made so from the last Rylan case study there was no major movement.