Happy Birthday Clark!

Clark, you are 2 (yesterday…)! What a year it was. In January you went to Mayo and saw some specialists. You started therapy through the Morris Coop in February. We loved those therapy ladies! You had a seizure in March that really scared us all. In June we moved to Bozeman and I worked outside of the home for the first time since your were born. You adjusted really well, you especially loved going to Felicia’s house two days a week. In August you had a your really scary seizures and were air lifted to St. Paul. We are all so grateful that you pulled through with your spunky and strong spirit. In August we moved back to Minnesota, this time to our house in Fergus that you never had lived in. You saw more specialist in Minneapolis over the last few months. You started therapy here and you see three different therapist every week. You do so well in therapy and have progressed in your fine motor skills so far that you tested normal in December (in September of this you tested delayed).

You still have bottles everyday but you are learning to eat a lot more. You want big boy food in the worst way and are skeptical of food that you know is for babies. You work hard even with your low muscle tone, and are such a busy little boy. You love to run, play and climb.

You have become such a little cuddle monkey again and give me a big hug before bed every night. You love your brothers, daddy, and Legos. Your love of the movie Frozen has never wavered and whenever you have a bad day we turn it on, it is a surefire way to brighten your day.

We saw more specialists in December and you were so brave. You have been through so much in your short life. We are grateful everyday for you, you have taught us so much and enrich our lives in so many ways. May this next year be a year of happiness and peace for you.

(A few pictures of Clark on his birthday)

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Opening homemade cards from the boys


A New Jacket!



At his party


A Tale of Car Seats

Back in the day, when I had one child and essentially was a stay-at-home mom with too much time on my hands, I used to garage sale quite a bit. Whilst garage sale-ing (is that grammatically correct?), I would often come upon car seats for sale. Since I was a good first time mommy, I knew that purchasing a garage sale car seat was verboten. After all, what if it had been in an accident, rendering it abused and unsafe?

Here is where I must stop to point out that my third child rode in a car seat that was purchased at a garage sale. I was grateful for it and he was quite safe. And yes, I am rolling my eyes at all of the self-imposed mommy safety police that deem it otherwise.

Anyways, these car seats were often priced obnoxiously high. Even worse, they were usually stained and rather disgusting. Needless to say, I was appalled. How could someone think they could get money for it? And how could a car seat become that gross looking? After all, don’t they regularly vacuum it? I mean, Remy never spilled one drop of liquid out of his sippy cup (ever the conscientious first-born).

Today, while waiting for Smith-Who-Never-Hurries to get in the van, I surveyed his car seat. A rather nice car seat that we spent quite a bit of money on. Rife with liquid stains, the white and blue patterned car seat looks more dark gray, with strange yellowish stains in random places. Down in the corner are some crushed Doritos that are of unknown age. The other corner is filled with non-descript crumbs. The car seat straps are set too low from the last time that Clark used it. I thought back to those 3 1/2 years of parenting one, very clean, child. When I did not work more than a few hours a week, or need to shuttle multiple children multiple places, or make time for 3-4 therapy appointments a week, or spend around 2 hours of my time a day just feeding one child (not to mention all of the other normal, daily tasks a mom does). What did I do with all of my time? Apparently, I cleaned.


Boys of Summer

Not to sound like a broken record or anything, but I hardly took any pictures with my camera this year. Other than hiking, these were the only non-phone pictures I took this summer in Montana. Nic lived in Minnesota the majority of the time that me and the boys were there. We lived in a townhouse style condo with a nicely landscaped little yard and really wonderful neighbors. Despite loving Bozeman, and our neighborhood in particular, it was horrendous being a single mother and the kids really struggled with behavioral issues while we were there. Between the move, me going back to work, and dad not being there it was a lot for them to deal with.

The picture of Smith with the hose is cute, but in reality, he was a little fiend with that hose. The boys were not supposed to play with the hose but would anyways (shocker, I know). When I would come outside to shut off the water and take away the hose Smith would spray me point blank with it while I was trying to take it away.  As difficult as that time was without Nic, these pictures still make me nostalgic for summer in Bozeman.




Hiking in Montana (Part 1)

I did not bring along my camera on all of our hikes, so I will have to do another post with the photos from our phones as well.


Smith still asks for “hiking sandwiches” – i.e. meat and cheese sandwiches.



Grotto Falls


This next set of pictures is from our hike around Fairy Lake. Most of my pictures of the actual lake are on my phone but it was hard to capture the unique color of the lake.IMG_4071IMG_4078IMG_4085IMG_4092IMG_4098IMG_4104

Easter 2015

As Christmas is looming in front of us, here are some pictures from our family Easter that we hosted on the farm this spring. I only took pictures of the Easter egg hunt, and there were more people there than are in these pictures. Note the boys straw hats. I got them in the dollar aisle at Target and the boys still wear them.

Recap of Clark’s Medical Appointments and Looking Ahead

One of the many reasons we moved back to Minnesota is the availability of pediatric specialists. We have made a couple of trips to Minneapolis in the last month in order for Clark to see a geneticist and a cranial/facial specialist.


After everything came back relatively normal on the MRI and completely normal on the EEG, we were advised to see a geneticist in the event that there is an underlying genetic condition causing both Clark’s developmental delays and susceptibility to seizures. We met with a geneticist in September at Childrens of Minneapolis. The appointment went well but we came away with the feeling that she did not see anything specifically related to a genetic syndrome. They did draw blood to do a general chromosomal test. They also gave us a referral to see a cranial/facial specialist since Clark has a ridge at the top of his skull that they thought might be concerning.

We just heard back from them today and the chromosomal testing came back negative, or normal. To this we say “yay!” but also feel a tad bit discouraged that we do not have a cause for all of this.

Cranial/Facial Specialist

We met with the cranial/facial specialist last week. He examined Clark’s skull and his palate, which had never been looked at before. Both were quite normal. We are encouraged that Clark does not need surgery of any kind, but still frustrated by his eating difficulties.

We had an informative discussion with the speech therapist at the cranial/facial clinic. Based on what we told her about his eating difficulties from birth, related to bottle feeding, she said he should have been receiving eating/speech therapy for quite some time. She referred Clark for a neuro/psych evaluation which will evaluate his development and IQ. That report will help us advocate for any special services or therapy that Clark needs that cannot be provided to us through the county. Clark will have that testing done in December.

Clark’s Therapy Plan

Over the last month or so, Clark has been evaluated a number of times by the special ed coop here. We will meet with them this week to put a formal plan into place. We do know that he qualifies in three areas for therapy and that he will be receiving therapy three times per week. We are really happy that Clark’s delays are finally being recognized and that the coop is giving us the resources he needs for that. We do feel a little discouraged that for so long we have heard “he is a little behind, but every kid is different”, and practically overnight he has slid off the scale in three areas and the coop here has essentially said “lets throw everything at him that we have”. It is typical for delays to become more apparent as kids grow, since there are more milestones to miss, but as parents it is frustrating to know something is wrong early on yet not receive the help we so desperately tried to find. We are really grateful to the coop in Morris that qualified him earlier this year by circumventing the testing results because they could see he needed early intervention then. Otherwise, this would have been the first therapy that he qualified for, and we truly believe his therapy earlier this year was so beneficial for him.

Clark’s Delays

I often get asked by people: so what exactly is wrong with Clark? Because when you see him, he is a very busy, social, and happy little guy and seems quite normal if a little small. The biggest thing for Clark is that he appears to have a motor planning issue. His body is capable of doing all of things it should do, but his brain is unable to plan the steps to do it. That, together with his low muscle tone, means he has to work harder to do everything. Thankfully he is extremely determined which has been such a blessing in helping him learn new things and meet those important milestones.

The most frustrating part of Clark’s delays is his eating. Because of his motor planning difficulties, he has not learned to chew yet. When he is first evaluated by a new therapist or doctor, they automatically assume he has a sensory issue since most kids his age that won’t eat refuse certain textures. However, Clark will try to eat anything. He refuses to eat his baby food at meal time if we try to feed him that while we are eating, and begs for our food. If the food is something that will disintegrate or is soft enough to swallow after sucking on it, he is able to eat it (i.e. crackers, bread or muffins, bananas). Anything that needs to be chewed before swallowing (meat, non-pureed fruits and veggies) he will spit out after sucking the flavor out of it.

Clark also had trouble eating off a spoon early on because of tongue mobility issues and not using his lips to eat, which has made the whole eating process even harder. Try eating off a fork or spoon without moving your tongue or lips sometime, it is nearly impossible. He seems to be gaining some motor skills in that area though which is really encouraging.

Because of Clark’s eating difficulties, he is still on bottles and pureed baby food as his main source of nutrition. He gets up once or twice a night for a bottle and I can hear his tummy rumbling when I get him out of bed for it. We do mix his formula stronger so he gets more calories. As his second birthday is fast approaching we would really love for him to be able to eat normal, nutritious meals with us. The cost and the hassle of formula, bottle supplies, and baby food would be nice to say goodbye to as well.

Since his eating difficulties are related to an oral motor planning issue, Clark also does not talk yet. Our two older boys did not really talk until they were 2 but they had a handful of words by 18 months. Clark does not have one word, no dada or mama. Not even no. He has been resistant to learning sign language as well. It is not quite clear if he is cognitively unable to learn sign language or if he just doesn’t like it (he is, after all, a toddler). Our therapist hopes that he will be able to learn to communicate through pictures at the very least. He is really good at communicating what he wants through sounds and gestures, but as he gets older he is getting more frustrated at his inability to communicate exactly what he wants.

Besides his delays, Clark’s chance of having another seizure is always in the back of our minds. We know that his Montana seizures were caused by his vaccinations, but he also had that first seizure in March. Clark’s seizures are considered to be tonic clonic seizures. They are scary to watch but the seizure itself does not do any damage to his brain. The problem with Clark’s seizures are that they are long and that they don’t seem to like to stop on their own. The biggest risk for him is lack of oxygen. Like I said in a previous post, he was blue when we got to the emergency room in Montana after a little over 10 minutes of seizing, and it took them another 14 to get him to stop seizing. We are really thankful we heard him on the monitor when he started seizing and since then we have kept a baby monitor close at all times when he is sleeping.

When we spoke with the cranial/facial specialist, he told us that the general consensus from all of Clark’s medical records is that he seems to have a lower threshold for seizures than the typical child. They don’t know why since the MRI and EEG came back normal, but he does, and they seem to be triggered by fever or infection (thus the complex febrile seizure diagnosis). So basically, we were told to not let him get a fever and that if he does, do everything we can to control it and keep it low. The hope is that he will simply outgrow his susceptibility to seizures, although we were told he does have a 1 in 4 chance of having another seizure. Thankfully, he is a sturdy little guy and doesn’t seem to catch anything and everything but we are nervous for the January-March months, which seems to be when viruses incubate and grow and cycle back around endlessly.

So that is the long and the very long of it. We have one more follow up with the geneticist and Clark’s neuro/psych evaluation in December. Other than that, we can start getting settled into life here, get in a schedule for therapy, and try to focus on our other kids a little more.

Clark’s Montana Seizures

When Clark had his series of complex seizures in Montana we communicated with everyone via Facebook, updating with pictures and results from his testing there, but did not share some of the more in depth details of what transpired.

Clark had experienced a seizure in March, while we were living at the farm. He had one that was around 10 minutes long, although we did not actually time it from start to finish. He was turning blue around the mouth by the end but came out of it on his own. He was unresponsive for another 45 minutes following the seizure. We were dissatisfied with the doctors diagnosis of a simple febrile seizure and frustrated that the neurologist at Mayo did not think it was necessary to do anymore investigating.

Due to some unfortunate circumstances and an over zealous nurse, Clark received 3 vaccinations on August 5th around mid-day. By evening it was apparent that he was quite ill and he refused his bottle before bed.

We keep a monitor in our room because Clark still wakes up in the night for a bottle. Just before 10pm, while getting ready for bed, I heard Clark start seizing on the monitor. We immediately started timing it, got dressed, and headed for the hospital rather than wait for an ambulance.

When we arrived Clark was blue and had been seizing for 10 minutes. They immediately began working on him and gave him anti-seizure medication. His seizure, which started at 10:00pm exactly, ended at 10:25pm. A second seizure started soon after and they gave him another round of medication. At that point he had been given the maximum dose they could give him. He continued to have a third and then a fourth seizure. His oxygen levels during this entire time were quite low, even with a cpap machine and oxygen mask on, so he was bagged several times by the respiratory therapist.

According to the ER report:

1st Seizure: 25 minutes
2nd Seizure: 17 minutes
3rd Seizure: Improperly recorded but I think it was 10-15 minutes
4th Seizure: 5 minutes

The pediatrician on duty told us she believed these were still febrile seizures but were complex, rather than simple. Because of his previous medical history she advised us that he would need to have an MRI and EEG to see if there was a brain abnormality that is causing him to be more susceptible to seizures. She also recommended that we air lift him out of Bozeman that night. The ER was concerned that he would start seizing again and did not feel that they had the appropriate resources to help him if he did.


After his seizures in the ER, waiting to be transported to the airport. Clark has on a cpap and oxygen mask.

Clark was air lifted to St. Paul early in the morning of August 6th. For the first day he could not sit up or walk because his muscles were so tight and sore from the intensity and length of his seizures.


Landing in St. Paul at 7:30am. Still totally unresponsive 8 hours after his last seizure.

While in St. Paul Clark had a MRI and an EEG. Both of those came back normal, although there were a couple of things the neurologist noted on the MRI. Because his EEG was normal there is no epilepsy diagnosis and Clark was not put on any medication.


Sleeping (thankfully!) during his EEG

By August 7th Clark was able to sit up and walk around, although he was still pretty unsteady. We were discharged late on the 7th and advised to see a geneticist as the next step in trying to determine a cause for Clark’s delays and susceptibility to seizures.


The day he was discharged from Children’s in St. Paul

We are thankful for the quick acting and compassionate staff at the Bozeman ER, and specifically for Dr. Henyon who I saw tear up as she watched Clark seize. She did not hesitate to diagnose his seizures as caused by the vaccinations and she erred on the side of safety by having him air lifted to a hospital with more resources.

Occasionally I think about that night, watching Clark’s tiny body shake and turn blue, and being unable to do anything to help him. I am so thankful for his life and that God saw fit to restore him to us.


Four days after his seizure – finally feeling more like himself

We Moved….Again!

Life has been a whirlwind since my last post. Only two weeks after Nic finally joined us in Montana, Clark had a series of complex seizures and was air-lifted out of Montana. I will do a belated post on the details of that night later, but as a result of that night, we made the difficult decision to move back to Minnesota.

Because of Clark’s medical difficulties and issues with childcare in Bozeman, as well as our pediatricians recommendation that Clark be kept out of daycare (he seizures seem to be triggered by infection and daycares are breeding grounds for germs), I needed to stay home with him. We also need access to specialists and to be closer to hospitals with pediatric resources. Any complex seizure would result in him being airlifted out of Montana to a children’s hospital with better neurological resources than can be found in the state of Montana. We also were struggling with Montana’s significant lack of therapy resources as opposed to the excellent services we had received for early intervention for Clark in Minnesota before our move. On top of that, we had been asked to break our lease the month before by our landlord, and we still owned two properties in Minnesota.

So, three weeks after Clark’s seizure’s, we loaded up all of our household goods (again) and moved back to Fergus Falls to the house we have been renting out for the last two and a half years. We currently have the farm for sale near Ortonville and are hoping that will sell quickly so we no longer have that liability.

We are all in a bit of shock still and struggling to process everything that has happened. Our move was pretty chaotic and we are still not unpacked which makes settling in a little difficult. I (Rachel), was offered the opportunity to work remotely, part-time, rather than having to completely resign my position in Montana. We are really grateful for this, but I am still trying to get in the swing of things while working from home and shuttling the kids around to school and the babysitter’s. Nic has only had to travel for work one week since the move which has been an immense help since he has been able to help with the kids during the week. However, two people working from home without a dedicated office space has been tough.

The kids are doing really well with the move though, all things considered. The first week or two back was the hardest. Remy is probably doing the best since he always wanted to move back to Fergus. He is starting to feel more comfortable at school and seems to be doing really well academically, thanks to how much more intense his last school was compared to this one (small, rural schools for the win!). Smith started preschool, 4 half-days a week, and seems to really enjoy it. Clark has been a little crankier than usual and had a hard time adjusting to sleeping here but is starting to settle in nicely too.

We are really grateful for all of the prayers and financial support we have received during this difficult time. Although we hope that our move back to Fergus is not a permanent thing, it is wonderful to be close to family and have access to the excellent medical and therapy resources that Minnesota has.


One of our hikes in Montana

Surprise! We Moved!

Since all of my readers know me in real life it can’t be that big of a surprise, but last week we moved to Bozeman, Montana. Without fail, when talking about the move with anyone, we get asked: “Why Bozeman?”, which makes me feel panicky and I stumble around looking for a legitimate reason that sounds good but the real reason is, we just wanted to. So there.

I know you might find this hard to believe, since it is Nic and I we are talking about, but the actual move had a lot of drama. I will try to condense it but, well… brevity is not my strong suit.


– The company we hired to install the septic on the farm finally showed up to start working on it the day we were packing the trailer and leaving the farm. That meant no water (toilet or otherwise), crap literally being tracked through the house while we were in the throes of packing, and when I laid Clark down for his nap they went down to the basement and started banging on pipes which meant no nap for Clark. I feel like that final experience just encapsulated our time on the farm really well.


The boys in the trailer at the farm

– My father-in-laws pickup that was pulling the trailer full of our stuff had some pretty significant issues less than a mile out of Fergus. After trying a few different things, we limped along until Valley City until caving and taking it to a dealership there. If you know Mark or Nic you know that taking it to a mechanic is a rare and terrible thing. In the end it turned out to be a relatively easy fix but it put us behind enough that we did not make it all the way to Bozeman that night.


Eating in Valley City while the pickup is in the shop


We finally make it to the Montana border, much later than planned

– After spending the night in Miles City, we woke up refreshed, optimistic and looking forward to eating lunch at our new home. However, between Miles City and Billings a trailer tire blew. The nearest tire shop is 20 miles away, but is thankfully open on a Saturday. In a hurry, I took off in the wrong direction and went almost 10 miles before realizing my mistake. We finally limp into Bozeman at 3:30 on Saturday, 20 hours after our originally planned arrival time.



For Reals?!!


In front of our rental


Sunday at The Garage with Nana and Boppa

We are so grateful to Nic’s parents for their help on this move!

Nic went back to Minnesota for another month to wrap up his job there, and to finish up some work on the farm so we can get it listed. I started my new job this past Tuesday and the boys have a nanny MWF and in-home childcare with a really wonderful family Tue/Thur. So far the transition has been going pretty well but we are really looking forward to having Nic with us in July.

I have good intentions to keep this blog updated on the regular since we are living further from family now, but… no promises.