Could it be... he is allergy free!!??

Well, we finally did it... we did a food challenge with Erik for his dairy allergy. It was one of the more scary things we have had to do with him at home. Our allergist was confident that he would be fine, but it took us about 6 weeks to work up the courage and have our timing right to actually test him. The directions were simple... give him a 1/2 ounce of milk and watch him for to see if signs develop within 30 minutes. Then, give him and ounces and watch him for another 30 minutes. Needless to say it was a LONG hour. BUT he did great!! Not one sign on his body, no hives, no swelling, nothing. So now we are to simply start adding it in to his diet. So much easier said than done! We are seeing some digestive sensitivities, like gas and a slightly raw bum, but nothing else. So we are taking it easy and letting him decide if he even likes the flavor of milk. If he incorporates dairy into his diet and we don't have to use his epi-pen for a year then we will be epi-pen free!!

We have scheduled an appointment with Erik's eye specialist to discuss surgery to straighten his eyes. We don't know much about what it may or may not be able to do about his vision, but we will at least get information. Plus, if we do the surgery it will be one less "thing" that is different. That will be nice for when he gets older.

We were hoping to move Erik to his next step with his braces (a brace the size of a high top shoe), but his PT and the orthotic team thought he needed a little more time. His PT would like him to master a few more skills in the braces he has (stand up from being seated without assistance and squat to pick stuff off the floor). He is getting really good at picking stuff off the floor, so now we are focusing on him standing up without assistance. This one is hard because he stabilizes himself with whatever he uses to stand up with. It will just take more walking and core building, but he can do it.

We are so proud of his progress... at school he has a little routine in the morning. He starts in one section of some bins and takes out a few toys and puts them on top of the cabinet, then he walks around to a huge cardboard play house where he goes inside and plays, he then ends by going to the "kitchen" and plays with the cupboards and the refrigerator. His teacher says he has a buddy that he "meets" in the kitchen and they play together! I can imagine him opening and closing, opening and closing, and opening and closing the cabinets.

At daycare, they offer a huge variety of food for lunch. This has been a huge blessing, because they have gotten him to eat a ton of different food. Who knew Erik would eat lima beans, or baked beans, or pasta. We have taken the things they do there and slowly incorporated them at home. We are very happy about his increase in variety. It gives us encouragement that he will eat more than just pureed food for the rest of his life. He is now down to one meal a day that incorporates baby food!

I realize this is a rather unemotional post, but there is so much progress to be discussed :)

(This is Erik with Flat Nolan - they went to check out an airplane at Dad's work. They are sitting in the cockpit)

The death of a dream....

The title seems kind of harsh, but the reality is the feelings that go along with the realization that whatever dreams we may have had for Erik ARE harsh. We feel like we have gone through all of the emotions that someone would go through when a loved one dies. I have been in denial. I have been angry, depressed, felt guilty, and hopeless (this one I tend to get stuck in). I believe in my heart and my mind all of the Jesus answers we are told to believe - everything happens for the good of those who love him... For I know the plans I have for you... Be still and know that I am God, etc.; however, I can not forget what we have been through. Occasionally, my feelings are stirred by looking back and never forgetting, but I also see the importance of truly knowing and accepting what we have been going through. The one emotion or feeling I think I have forgotten to deal with is how scary this journey is. We have no idea what Erik's potential is and yet, we are driven to dream and hope. It is a dangerous request of our hearts to continually hope for the best and dream for his future. I find myself hesitating to move forward, because of the fear of having to grieve the death of our ever-changing dreams for Erik.

We can not deny the goodness and joy brought into so many lives because of Erik; however, we have been called to care for him and raise him to be who God intended him to be. While this is the call of all parents, there seems to be so much pressure to get this one right. So, dreaming and hoping for Erik has become a different picture. We dream of the little things in life and hope for Erik's best, not what we depict to be his best. I know I have talked about this before, but for some reason, this idea is heavy on my heart.

We have been blessed to find a community of people on Facebook where parents of children who also have disorders of Chromosome 6 can find support, encouragement, and answers. While there is no doubt that we have benefited from this group my heart breaks for the families who are going through much tougher situations than ours. .

We will continue to walk this tightrope of fear and faith, but more often than not my dreams die and my faith has to step in so I am reminded to keep going and not give up on Gods reality for Erik. It is a constant readjustment...

New Seasons

We are entering a new season with Erik. Not only is he gaining weight and growing in inches more steadily since moving to Tennessee (which we are thrilled about), he will be starting preschool in 2 weeks. That's right, let me repeat myself... TWO weeks - the day after his 3rd birthday - December 17th. For Erik's entire 3 years of his life he has been behind developmentally. As we have been moving closer and closer to his birthday, preschool at 3 yrs old was not going through my head. I didn't even know it would have been an option, until we moved here and reality was starting to become more clear. 

So often we hear how fast kids grow up, how quickly they grow, or "they won't be a baby for long". This has not been our story. Erik is still wearing 24 month old clothes, isn't even close to being potty trained, still working on getting him off of pureed foods, and can only say a couple of phrases independently. While I would never ever change how much "baby" time we have gotten with him, the school "season" has come up quickly.

From the first day of school we are expected to drop him off and not communicate or "conference" with the teacher. They take his independence very seriously and want it to start the moment he steps into the classroom. I have a feeling we will be surprised beyond what we can imagine for how much Erik will be able to do by himself when faced with the opportunity. My biggest fear for Erik has been for him to get stuck, developmentally. I can tell this will not be the case with preschool, but I can't help but be terrified for what he will experience. All of the doubt that he won't be able to do what the other kids do or he won't be able to do what his teachers ask of him race through my mind. I plan to be in communication with his teacher through email which will be helpful or I can set up meeting time, but from what I can tell and the short interaction between her and Erik - she is going to be perfect for him. I can see her ability to use life the way that Erik encounters it will be his learning opportunities; which is how we have approached his learning at home. For example, it is ok to let a cracker fall on the floor because the amount of coordination, concentration, strength, vision, and determination it takes for him to pick it back up is what it takes for him to develop and learn. We have had a crash course in patience with Erik as he learns to teach himself and us how get to know his world. I can see that same attitude in his teacher. (While I know this is probably the same perspective all or most parents take, the amount of time it takes Erik to learn the same skills seems to take so much more time - hence his development delay). So, while we are nervous and scared to change seasons, we couldn't be more thrilled to know we are more blessed than we can see right now.

His first school backpack has been ordered. There will be pictures taken of course. Stay tuned :)

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. Jer. 29:11

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.