Has it really been since March that I have posted a blog??? Bad blogger, bad blogger (say that 3 times fast). Well, a lot has changed in our world. I have posted a few updates on FB as major things have happened; however, it would be good to perhaps get them all in one place.

The biggest "family" change, as many already know, we are now living in Hendersonville, TN. I never knew I could be homesick for two different places. I haven't lived in WA state for over 10 years and yet, I felt sad to be so far away. We had a wonderful community of friends in CO and Erik had some great opportunities for services; however a lot like other families trying to make decisions that move us closer to our desired lifestyle, this was the best direction to go in. 

So what has happened since we've moved...? For Sean, he is working 6 days a weeks until I can get a job. He is working his tail off; however God is providing and we have exactly what we need. We are blessed to have a husband/dad that does what it takes. Sean received a promotion 2 months after being in Nashville. This is the same promotion he applied for and interviewed for in Colorado Springs 8 times and was passed over for someone else. He has a great manager and feels established with his co-workers. His job is hard and physical, but at the end of the day he loves what he does.  

For Erik: A lot has happened for Erik. First off... HE IS WALKING!! What a determined little boy. So proud to be his mommy. We are getting his services and doctors re-established. It has been a process, but we have been connected with Vanderbilt, so we are in good hands. We have been cleared by the neurologist here in TN. Which means unless something comes up, we won't need to go back. Yep, that's right - no MRI for his 3rd birthday PTL! On the flip side... his PT requested Erik be evaluated by an orthotic specialist to evaluate his gait now that he is walking. Because Erik has had muscle tone issues, we want to be proactive with his legs to get them strong, so he doesn't have issues down the line. With that said, the specialist believes (and we agree) he would benefit by having supportive braces. The make up of Erik's legs require him to have the braces come up to his mid calf. While this is one more thing he will have to "deal" with it has caused Sean and I to develop the right attitudes. We have a choice to react in fear or teach Erik how to accept his situation for right now. The braces will hopefully not be permanent, but his attitude will follow ours, so regardless of how long he has to wear them, we set the tone. Of course pics will follow as soon as we can get them.

For me: My transition has been FULL of mixed emotions. I am grateful for the time I have had with Erik and feel our entire family has benefited from me being at home full time; however I will not lie when I have moments of discouragement. I went to school for a reason and I want to be able to use my education. The degree I received is very flexible and adaptable, so I have been applying to a wide variety opportunities. I have had two interviews, but both were not the best fit. Relying on my faith as come in handy more times than I realize. I have learned that I am a patient mommy unless I allow my fear to overtake me. I have learned to laugh and play with Erik - which is a lot easier to do when I'm not writing 20 page papers. I have learned the importance of just being happy - smiling when Sean comes home, smiling at the store, or simply smiling when I'm trying to find a parking spot. The feeling is strange when there are so many "things" I could be frustrated with or unhappy with, but choose to just stop it and change my attitude. Above all, I have that peace that passes my understanding and that my friends reminds me that we are not alone.

Just in case any of you missed the release video of Erik, here ya go....

I almost don't know where to begin

It has been over 7 months since my last blog.... so much has happened.

The last I reported  was Erik is crawling!!! We are very excited about his progress. We have moved to closer to Denver which is about 1.5 hours away from Fountain. With this move came more access to more services. Erik is now attending Anchor Center for Blind Children (www.anchorcenter.org). He does vision therapy once a week. There are physical therapists, occupational therapists, speech therapists, and vision specialists. He goes to 3 different classes; the first is the motor room where he gets to play in a ball pit, jump on a trampoline, or crawl through tunnels (which is not his favorite). We have learned so much about his vision. During the initial assessment we learned he can see about 4-6" away, he can see color, and he likes to take toys apart. The biggest tip we have learned about Erik and how to support his visual experience is to let him explore new things with his feet. This has made a huge difference! Even his feeding has gotten better. When we introduce new food we will rub it on his feet first and let him "play", when he is ready he will bring the food to his mouth. Very fascinating! With that said... Erik is eating ground meat, graham crackers, peanut butter and honey sandwich's, and coconut yogurt.

We have an OT that comes to our house now too. Her name is Rebecca. She comes once a week and works with Erik on feeding, walking, and sensory issues that are common with children with vision issues. We work with Erik on his walking, but he still isn't able to walk by himself. However, that  doesn't keep him from exploring. He is very curious and knows what he wants. His determination is high, which will hopefully continue throughout him growing up and for the rest of his life. We went to the Children's Museum the other day... he found a favorite gadget and couldn't walk away...

"The Mirrored Owl" - it turned like a steering wheel. Erik thought this was so cool!

The last experience with Erik and his journey is his newest therapy... Erik is now doing hippotherapy. This means he gets to ride horses!! There has been quite a bit of research done that shows results of helping people learn to walk by riding horses. The gait of the horses teaches people which muscles to use while strengthening their core and muscle tone. We are very excited to see Erik develop. Next week will be his 2nd session. Don't worry, I've included pictures :)

Erik where's a helmet when he rides.... Safety First!

This is Erik riding his pal "Isabel". Isabel is very good to him... even if he does right on his hands and knees going backwards!

He even rides while playing musical instruments... "Look Ma, no hands or saddle!"

On a more personal note... we have been informed that there is a <1% chance that was Erik has will repeat to our next children. We are ecstatic to begin planning for more :) We all know that what Erik has is intentional and we are blessed to be a part of the bigger picture. However, we can not deny our excitement for our future children.

We still do not have a name for what Erik has only the information that there are parts of his DNA that are missing. All of his cute features are a result of this deletion, which will be interesting to see how these develop as he gets older. Cognitively, Erik is all there. We saw the neurologist in January and the doc gave us 2 thumbs up for Erik's intelligence and understanding of the world around him. Another concern was the chances of Autism; however, we have spoken with two of Erik's providers and neither of them are concerned about Erik and the potential for Autism. Answered Payers all over!!!

Love being Erik's Mommy

Don't get me wrong, I love being a mom, but what I love more is being Erik's mom. He is progressing in his development, easily moving into his 2 year old "attitude", and growing more comfortable and confident with his curiosity.


While life at dr's offices is calming down, there is still the lingering unanswered question of, "what does Erik have, anyway?" We are beginning to get the, "Well, I'm not sure what this is.", answers. In the DNA test that cleared Sean and I of being carriers of whatever Erik has, it states, there are no other cases reported that include both the deletion of the section of DNA and the developmental delays. Normally, when this specific section of DNA is deleted there is nothing else "going on". The lab who conducted the test would like to do a case study on Erik; however, we are very hesitant on proceeding since we don't have any answers as of today. We might consider this as Erik gets older or once we find out more of what we are dealing with. We aren't quite ready to offer him up as a test subject until we are confident that he is getting services and support to benefit his development and function.


We are scheduled to see an ocular geneticist, in September, to help determine more specifically what we are dealing with in regards to his eyes. We saw a retinal specialist in July. It was great to get connected to the dr. since we will have to see him every year; however, he was not able to confirm what the DNA test were saying (Stargardts). He said the only way to get a good look at Erik's retina was to put him under anesthesia. He did not feel it was appropriate to put him under only for the tests. The dr felt it would be more appropriate to perform the test if there was another reason he was going under anesthesia. We were very thankful for his perpective, because Erik has been under anesthesia enough.


So we shall see how things develop. Our geneticist continues to gather test results and make recommendations in order to move towards a diagnosis. For your viewing pleasure and incase you weren't able to see it on Facebook, I have included the video of Erik crawling... Enjoy!

I apoligize fore being such a horrible blogger... I am realizing that things are happening, but don't seem significant in the moment and then time goes by and I say to myself, "Man, I should have blogged right when it happened." So once again, I will try and catch you up...

Well, we no longer have a ped dr. A little frustrating, but God knows what he is doing. In the end, she was the PERFECT dr. for us for the time we were with her. A week after we learned she was no longer with the practice, she called us from her home to check on us and once again give her wonderful guidance to move us just a little bit further with giving Erik the best. She introduced us to a program called "Child Find". Child Find helps give families the resources needed to help their children with disabilities (i.e. physical therapy, occupational therapy, speech therapy, etc). She also gave us a list of questions to help us find a good ped dr. Two interesting things she suggested were, we should apply for medicaid to help pay for some of Erik's stuff and to start applying for disability. Talk about a reality check. It's hard to swallow or even admit that Erik would actually qualify. Neverthless, she's right, once we get to Denver, we will begin the long and lovely process of applying to both.

On the medical side, we have received our first positive test results. The biggest reason we aren't jumping up and down having a party and thanking God is because we aren't convinced it's the end. We believe, as well as the neurologist, that there is more. Nevertheless... drum roll please...... the diagnosis they are working towards is called "Stargardt". So, our journey continues as we move closer. It is a HUGE step, but not the final landing. Sean and I will be getting tested to see if either one of us is a carrier.

Most recently, we have had our evaluation/consultation with the Child Find team. They found that Erik is 49% delayed. Which is about what we thought. So he is about the age of a 10 month old. However, we had a breakthrough with Erik. He started clapping, giving high five's, and he has progressed to graham crackers!! But the biggest breakthrough of them all..... Erik is CRAWLING!!! Of course it's done in Erik's special way, not like other typical babies, but he is on his hands and knees and moving across the floor. It is pretty noticable that something switched with Erik. We are blessed to see him progressing and amazed at his character.

3 in 2

We have been very busy lately, with lots of news and possibly different directions. We have been to 3 doctors in 2 weeks, whew! So let's start with the first...

The neurologist - we had a good visit. He was pleased with Erik's progression and development. He still needs work, but he sees improvement. He weighed in at 19.8 lbs! That's almost 2 lbs in 2 weeks. He went over the images of Erik's MRI, that was done back in January. As suspected, the amount of white matter in his brain is not as developed as it should be. But we can help development by nutrition and therapy. To refresh your memory... white matter is the tissue that helps with muscle function (i.e. large muscles, eye function, digestive function, etc). One thing the doc is going to have us do is a DNA test, yes that's right, he believes there is still a chance it's not a mitochondrial disorder! If it's a DNA issue, than it's more likely a "flook", for what Erik has going on. If it's mitochondrial than it's much more serious and we are dealing with more issues.

The naturopath - because of Erik's allergies and the nature of the things we are dealing with, we decided to see a naturopath. She was great. She read the detailed report from the genetecist. She has a different perspective of what others see. For example: the shape of his head. The geneticist believes the shape of his head is part of whatever disorder he has, but the naturopath believes it's because he was breech. His head was smashed against my ribs during labor, which flattened the top and made it more oblong. She did some cranial work and will continue to be working to move his cranial bones back to a more optimal position, rounding out his head. AMAZING! She believes he may be allergic to corn; which happens to be the #1 ingredient in the special formula recommended for kids allergic to milk. There is still some congestion with the new formula, but nothing like it was. We did a test that will look for reactions to 96 different foods. So for now, we have kept his food the same, until we get results in a couple of weeks. We are very excited to continue working with her and see how we can work together to figure out what we need to do.

The cardiologist - So to look into why Erik's hands and feet were COLD and RED, the pediatrician said we should see a cardiologist, because those symptoms can be indications of poor circulation and heart issues. WELL, since we changed formulas... he hands and feet were no longer cold or red. We could not figure out how this worked, but it did. When we told the naturopath she suggested it was because the cold hands and feet were actually an allergic reaction, from possibly the corn. Our new formula may not have nearly as much, hence him not reacting like he did before. So, when we saw the cardiologist he did an EKG and did a thorough check of his heart/pulse - in his chest, hands, and feet. He took a brief history and said, "I don't need to see Erik again. He is fine. He has a great heart". Yeah!!! Finally, good news from a doc who doesn't need us to come back :) - side note... the cardiologist had an english accent and looked like Pierce Brosnan (sp?) and he wore a bright colorful BOW TIE!

Well, I think we made it through our update. We've been busy, but things are settling down again and we like that.

Getting over the bump in the road...

We are feeling better since our last blog. This is where we are today... Erik IS GAINING WEIGHT!! Before we put him back on formula I measured around his calf. My thumb and middle finger could easily touch (I have tiny hands), now there is about 1/2 - 1 inch between them! Woohoo! We had the x-rays taken, but have not heard anything about what they saw, if anything. So, not sure if not hearing from the doc means good news, but we will see. Another giant improvement... Erik's hands and feet aren't cold or purple. It seems as though, since he started gaining weight, it's changed. We are going to keep the appointment with the cardiologist, just to make sure. We are working with the OT about his feeding. The OT seems confident about getting Erik on the right track.

It's a big difference from Erik's last checkup til now. It's been a lot of work to get all of this figured out and to keep everything straight, but it's also been encouraging to see who God brings from the woodwork. He always shows up. It's so good to see Erik improving and feeling better. Below is our latest venture out with NiNi and Grandpa, enjoy :) (I know we do)

Spoke too soon...

Today was a hard day... a few tears of frustration, to say the least. So, Sean took Erik to the pediatrician for his regular checkup; here's what we found... 1) Erik has an ear infection! who knew. NO signs at all! Poor kid, who knows for how long. 2)Next.. Erik has cold hands most of the time, even to the point of turning purple. We are to talk to the neuro about what this could mean. So a call was made to the neuro to see if this is something he needs to be seen for sooner than April 7th. 3) Next... Erik's pediatrician is concerned about how his spine is developing. His spine is bulging in his mid to low back. We can especially see this when he sits. So the ped dr. will be ordering x-rays and we are to ask his PT if she sees anything that might be of concern and get her opinion. 4) Next... the dr is worried about Erik's weight, he lost even more since the geneticist appt (which is weird, because I could have sworn he was gaining weight). She suggested putting him back on the special formula he was on before - Sean was great and told her the allergist said there is still milk in the formula, so the dr will be calling the allergist to decide what will be best. (way to go Sean - good lookin out)! I think that's it... Talk about stressful, ugh! We now have added more things to our list, just as we thought things were settling down to normal. Lord, hear our prayers...