The House of Doo

The House of Doo

Thursday, October 22, 2015


This song is so appropriate. Thanks, Gavin Degraw.

"Where did all the people go?
They got scared when the lights went low.
I'll get you through it nice and slow,
When the world's spinning out of control.

Afraid of what they might lose
Might get scraped or they might get bruised.
You could beg them, what's the use?
That's why it's called a moment of truth

I'll get it if you need it,
I'll search if you don't see it,
You're thirsty, I'll be rain,
You get hurt, I'll take your pain.

I know you don't believe it,
But I said it and I still mean it,
When you heard what I told you,
When you get worried I'll be your soldier.

Funny when times get hard,
At the last moment when you're supposed to charge,
Always on the longest yard,
Oh, they feel their feet getting cold.

Hiding here, hiding there,
Find them underneath the stairs,
People hiding everywhere,
Trying to be still like a stone.

I'll get it if you need it,
I'll search if you can't see it,
You're thirsty, I'll be rain,
You get hurt, I'll take your pain.

I know you don't believe it,
But I said it and I still mean it,
When you heard what I told you,
When you get worried I'll be your soldier."

I just wanted to tell you all that we are doing okay. It still hurts. I still hurt physically. The physical healing is harder than I was imagining. I am really struggling with anxiety and I feel the beginnings of PPD. I really struggled with this after Colt, but found little help. I refuse to get by on my own this time, but I also have a new doctor this time. We cry, but we can talk about Collins now without crying every time. Colt talks about her a lot. He wakes up crying in the night some and when I ask him what is wrong, he just says he is sad. I don't know if he's dreaming about her or what, he won't say. He is so very sensitive, I know it's going to take a long time for him.

This song I posted above fits so perfectly for this time in our lives. Our loved ones are incredible. Last night a precious friend gave me this beautiful necklace, cooked dinner for us and entertained us, then sent us home with homemade pumpkin bread.

When we got home, there was a huge box of homemade cookies and a sweet note on our porch. Every day there are cards in the mail. Every day there is a text or a call from a friend, or a message on Facebook. A sweet friend looked up blogs on second trimester pregnancy loss to try to understand how I was feeling. So thoughtful. We appreciate these things more than we can say. Thank you.

Wednesday, October 14, 2015


My last blog post, I shared some happy news - we were pregnant with a baby girl named Collins. Today, I have to say that our sweet Collins is going to live out her days in Heaven.

One week ago, I went in for a regular checkup. I was in my second trimester and wasn't worried about a thing. While doing the usual Doppler check of the heartbeat, my whole world crashed around me. Baby Collins' heartbeat stopped. I heard her very last heartbeat. The nurse tried to assure me she was "just squirmy" and we were just losing the heartbeat with the Doppler. My doctor came in and tried to find it, but it wasn't there. Two ultrasounds later, it was still not there. I had literally listened as my baby girl's heart beat for the last time. I cannot even explain the feelings that caused.

Here we are, a week later. Ryan, Colt, and I are at the beach for Colt's fall break. Our first vacation alone ever. Funny how that worked out - this was not our original destination  (Disney) or our originally planned week. It just happened to fall right after the worst week of my life. I am trying to enjoy myself - and I am, in spurts - but it is hard.

I have all of the typical postpartum feelings, and then some. I have your typical post-baby body, but no baby to show for it. I hurt physically and emotionally. Ryan hurts. Colt hurts. Colt is angry and aggressive, particularly with me. I failed him. He doesn't understand that I didn't choose this.

People can't warn you for what you feel after you lose your baby. Everyone feels it differently. No one wants to talk about it. No one wants to admit to the self-loathing that you feel. The anger. The grief. The complete sadness. The exhaustion. The never-ending tears. The guilt. The guilt you feel when you find yourself smiling, because you will. Then you will hate yourself for it.

I am trying not to feel guilty. I am crying, a lot. I am angry and short-tempered, and emotional. I am mad at people who weren't there for me, but trying to understand they probably have no idea what to say. I am also infinitely grateful for those that were there. The ones that sat at my table or on my couch and let me cry. The ones that were there (even before me) when I showed up at the hospital to have surgery, the ones there when I came back - empty. The ones that took Colt to school, home from school, fed him and played with him when I couldn't even do it for myself. The ones that brought food, flowers, toys for Colt. People will show up  when you need them.

Anyway. I am sharing this because no one ever does. It happens a lot more than we want to think. October is Pregnancy and Infant Loss Awareness Month. Here is my feeble attempt to shed some light on it. It hurts. Ask for help. I am. I need help. I need support. And that's okay.

Tuesday, October 6, 2015

I'm Back!!

I have been itching to update my blog lately and when I finally pulled it up to get started, I realized that I haven't posted since March! It is now October! I am so far behind! If I updated everything, this would be a REALLY long post, so I will try to keep it to the basics.

Colt finished up at Siskin and we miss it a lot. However, he started Pre-K in August! He loves it most days, but we are struggling with his behavior. He is in a "typical" classroom of 23 kids. That's a HUGE difference from Siskin so I expected some adjustment time. We are almost two months in now and it is still a problem. We'll hopefully get things under control soon. They have called in a behavior specialist to help come up with a behavior plan to see if things will change. Here's hoping.

Around the same time Colt started school, we found out we were pregnant. Colt was less than thrilled, but he seems to be coming around. When we found out the baby is a girl, he got more excited. I think it will be a huge adjustment (of course!) but I think Colt will be a fantastic big brother.

Some other things have changed for Colt, too. Some time this summer, Colt had his third MRI to check his brain damage. The MRI showed the damage had cleared up - seemingly on it's own. Everyone seemed so thrilled! I didn't share on the blog because, to be honest, I was very frustrated by that. Let me TRY to explain. For 4 1/2 years, Colt has been different than the other kids. He has "significant developmental delay", nystagmus, strabismus, amblyopia, he didn't talk until he was well over 3, he has hypotonia, he has macrocephaly, he has right-side body weakness (stroke-like symptoms), and he gets speech, physical therapy, and occupational therapy every week. He has some severe sensory issues and is being evaluated for high-functioning autism. When we knew that he had this brain damage, it EXPLAINED these symptoms and their connection to one another. Now, the MRI is clear and yet, he still has all of these symptoms. So if the brain damage didn't cause these things, WHAT DID?!?

I have struggled with this for months, but you know what? I think it's justified. As of the past few weeks, we have noticed another thing. Colt is having what we (and his neurologist) believe are mini-seizures, also called absence seizures. They look a lot like daydreaming but for about 20 seconds, he is totally unresponsive. When it's over, he looks pretty confused for a few seconds, then carries on with what he was doing when it started. We started to really get worried last week when it happened in the middle of a restaurant during dinner. It happened again the next morning when I was trying to get him out of the car at school. Ryan and I decided it was time to call the neurologist. We called him and left a message with his nurse on Wednesday. We didn't hear anything until Friday evening when the nurse called and said our neurologist wanted Colt in his office at 8 Monday morning. Yesterday was the day. The doctor thinks they are definitely mini-seizures, but we have to confirm them with an EEG that is scheduled for November 9. It will be at the hospital and last about an hour. If the seizures don't show up there, we will have a 48 hour "take home" EEG after that. The neurologist says that if they are to the point of interrupting his dinner, he would be confident enough to go ahead and put him on medication now, but the EEG will help us know exactly what is going on.

He talked to us for a long time. He feels like we are not to the bottom of the Great Colt Mystery yet. He says the MRI wasn't a huge success because every single day, an MRI will look different. Seems kind of pointless to keep doing them to me, then. Anyway, he says he still believes there is an underlying problem that we haven't found yet. He says that the older Colt gets, it manifests in a different "symptom" and maybe as he gets older, we will have enough pieces of the puzzle to figure it out. He says it could be genetic or it could be a brain structure issue. This is why I am frustrated - the second MRI did show a brain issue and we thought we had our cause, now it's gone and the symptoms remain - and keep coming.

So, I have been struggling lately. I just want to know what is going on with my boy. I want to understand. I hate all the doctors, I hate all the testing, I hate the constant "study" of him and the evaluations and the questions and the stares when he melts down in public, but I want to understand him. I want him to have someone (two, with Ryan) that "get it" and that can support him. I want him to know we don't think he's weird, that's he's special and fantastic the way he is. It all sucks, but the evaluations help him get the services that he needs to have a successful life. So that's where we stand now.

Also, knowing it could be genetic scares me for our baby girl. Sure, it isn't anything horrible and it could be so much worse, but it has been a long road for Colt. It's a lot of doctors, a lot of tests, a lot of surgeries, a lot of therapies, a lot of evaluations, and some days are just too much. I don't want her to have to go through it, too.

By the way, her name is Collins Everly and she is due April 6, 2016.

Tuesday, March 24, 2015

A Mother's Job.

Wow, I haven't posted in over two months! Sorry! There really has been a lot going on since the last post. For starters, Colt spent three days in the local children's hospital for pneumonia which was exacerbated by his asthma. He spent about 8 days in bed. No playing, no reading, no nothing. Just sleeping. He was pitiful. However, he made a full recovery for the most part. We've done a few rounds of steroids since then, including this past week, when he was diagnosed with bronchitis again. Poor kiddo has terrible lungs. We're on day 6 of antibiotics, so I think we're on the mend.

Now, here comes the big part and also the part where I struggle the most. I am about to get very honest, consider yourself warned.

 We recently saw a behavioral psychologist and she did a full analysis of Colt and his development. She took the reports we've gotten from our pediatrician, ophthalmologist, neurologist, geneticist, and our different evaluations for physical/occupational/speech therapy through our school system and reviewed them. She also made her own analysis. She asked us more questions than I could ever count, while observing Colt at the same time. She also had him perform some tasks or exercises to see how well he could complete them. Let me say, it's hard to watch someone critique your child. This lady could tell that Colt has some brain damage just by the way he moves his arms asymmetrically when trying to perform a difficult task. Luckily, we already knew this from a previous MRI or I imagine that would have been a bit of a shock. He still has very low muscle tone and very little reflex. Long story short, she diagnosed Colt with Sensory Processing Disorder. We already knew this was most likely going to be our diagnosis, but we finally got it. Our pediatrician thinks Colt also has a place somewhere on the Autism spectrum. Now the spectrum is HUGE, so we don't know much about that yet, but he thinks he's obviously on the high-functioning end, possibly with Asperger's. One day I'll get into that more, but for now, we don't know that for sure just yet.

Let me take a second and explain Sensory Processing Disorder. Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. The condition used to be called sensory integration dysfunction. This site has some wonderful information -  Basically, for some kids (and adults too!) noises are louder, smells are stronger, lights are brighter, clothes are scratchier, etc... OR they can have the opposite situation. They seek out loud noises, bright lights, fast movement, etc. They can also have a little bit of both situations. This is Colt. He HATES certain smells, to the point of vomiting. He hates certain textures - clothes, food, etc. He hates certain noises - the sound of fajitas sizzling, startling noises like alarms, the toilet running, etc. However, he loves to swing fast, ride rollercoasters, and loves loud music in the car. There's so much more to it than this, but you can read up on it if you like. This is a fantastic link.

Now, let me explain why our diagnosis is important.

Colt gets physical, speech, and occupational therapies through our school system, like I mentioned before. HOWEVER, this therapy is very much education-based. It is designed to help him succeed in the school setting. This is fantastic, except it doesn't always help us at home. Please know, we love our therapists, we love the school where he receives the therapies, we have no problems with them at all. BUT, we need more. They see so many children and we only get 30 minutes a week. By the time you get Colt to focus, half of the therapy time is gone. So we've decided to pursue this and get him private therapy too. Say what you want to say, but this is my JOB. My job as Colt's mother is to do everything I can to help him succeed. The preschool age is CRITICAL for development and if I don't help him learn coping strategies and attempt to help desensitize him to the things that cause him to shut down, he may not ever learn. This can develop into a much bigger problem without treatment now.

So. We have our SPD diagnosis which allows us private therapies. FANTASTIC. When we left that first appointment, I made four more appointments for evaluations. Let me lay out the next few months for you -

April 8 - neurologist appointment (making another appointment then for a sedated MRI)
April 14 - speech therapy evaluation
April 22 - occupational therapy evaluation
May 4 - physical therapy evaluation
May 27 -  allergist appointment (asthma)
June 15 - ENT appointment
July 6 - developmental pediatrician evaluation/appointment
July 13 - ophthalmologist appointment

Add in there Speech/PT/OT every week. Also, add in any of your typical pediatrician well or sick visits (we have many!), and ball practice and ball games because, maybe we're crazy, but we signed Colt up for baseball this year. Once we get the private therapy evaluations completed, we'll be adding in three more therapy sessions a week. That is SIX therapy sessions a week.

I say all this because I am a parent of a special needs child. It took me a long time to be able to say that term - SPECIAL NEEDS. That's a tough pill to swallow, but you know what? It could be so much worse. Colt can walk, jump, swing, play baseball, and talk (though I thought we'd never get there!) and there are so many people, probably people you know, that have it much worse. They have more appointments and therapies than we do. They need your support. They need to cry to you because it's been a long, tiring week. (Heck, that's any parent!) The thing is that they may not know how to ask for your help or your support. If you know someone that shares some of our struggles, let them know you're thinking of them. It means a lot. They probably desperately need your encouragement. You probably don't even realize the hours they spend researching, calling, planning, driving, going to IEP meetings, and advocating. It's exhausting.

Recently, I have gotten a little braver about sharing our struggles and our "labels" with others. A dear friend of our family approached me about it at church. She told me she was so proud of us for being able to "embrace" it. She is proud of us for not being in denial. You know what? That's not easy. It's NEVER easy to admit or accept that something may be different about your child. Who wants that?!? I don't, but you know what? That's my job as Colt's mother.  I have always been someone that "writes" out my feelings. It has gotten me into trouble more than once. I still do this, but I am hoping my words can be more helpful these days. I get by through support of other mothers like me - reading their blogs, mostly. I have shared our struggles (and our many victories!) through my blogs from the start of our journey. If I can be a voice and help one person be brave and face an issue, then I have succeeded. There may be someone reading this that suspects their child may need a little extra help but are afraid to pursue it. If that's you, do it.  Talk to your pediatrician. Send me a message! I can help you know where to start. I have jumped through more hoops and cut through so many rolls of 'red tape' it's crazy. Don't be afraid.  Your child deserves it. It's your job - YOUR JOB! - to fight for them until they can fight for themselves. It's your JOB to teach them how to fight for themselves and it's your JOB to teach them that THEY ARE WORTH FIGHTING FOR.

Don't be afraid of the term "special needs". All I can see in that is that my son is SPECIAL.

Thursday, January 15, 2015

Behavior Frustration.

You may know we have had some real struggles with Colt lately. He's getting into a lot of trouble, at home, church, and school. He is biting, hitting, and kicking his teachers. He has bitten a friend twice and that breaks my heart because we have been on the receiving end of a child like that. It's hard as a parent to know that has happened to your child without wanting to spank the other kid. I get that. Luckily, that little boy has a really sweet and understanding mother. That has stopped for now, but it's his teachers (and me!) now. FRUSTRATING. He knows better, but it's like he absolutely cannot control it. It's a true impulse and I have no idea how to teach a 4 year old to think before acting, when he obviously reacts before he CAN think. After these kinds of situations happen, he immediately starts apologizing. When you ask him why he did something, he always says, "I don't know. I really don't know." I believe him, he really doesn't know why he does it. :(

It's hard these days and I am so frustrated because I know my son is not a bad kid. We punish him, teach him rules, reward him when he's good, and stick to our guns. We don't give in when things get hard. We don't stick a "screen" in front of his face to pacify him. Actually, he has a LeapPad tablet that he loves but it is reserved for doctor's offices, long car rides, and rewards. I only say all of this to make the point that he's not an undisciplined, pacified child, you know?  ANYWAY, this morning I took him to school and his teacher had come up with a special plan for him. She had written a story about the appropriate way to act when you are frustrated or anxious or whatever and in the story, if he reacts the appropriate way, he gets to play with a "Minion" toy. You know, the little yellow guys from the 'Despicable Me' movies?  Well, his teacher went out and BOUGHT HIM A SPECIAL MINION TOY. It was sitting up high on a shelf. It is ONLY for Colt, but ONLY if he reacts the correct way and not the way he's been reacting. This story had pictures and everything. She went out of her way to try to help him.

This is not the first time she has done something special to try to help him. Nap time is a real fight at school, as he's suddenly stopped napping. Apparently Colt can't be quiet and still (shocker!) during nap time, so it disrupts all the other children who do nap. His teacher set a timer and if Colt is still and quiet until the timer goes off (just enough time to let the other children get to sleep), he gets a special "quiet box" she made up for him with all kinds of quiet activities to do while his classmates nap.

These situations have helped me see that there is no place around that would accommodate him the way his school does. They go above and beyond to make sure he succeeds. We're not there yet, but with a teacher and a facility like this, I can't see how he won't. I am so thankful for their help and support and amazing resources. I am also thankful for a caring, patient, understanding teacher.

Snuggling with his weighted blanket.