Thursday, September 29, 2016

School Woes

Today, my heart hurts...

When I was pregnant with Caiden, I swore to myself we'd have family dinners. I used to bother Korey about wanting him to get used to eating without sitting in front of the TV because, once Caiden was in school, I wanted us to eat dinner at the table like a real family. I wanted us to be able to talk about how our days were in a way I never got to growing up. I can count on one hand the number of times my family ate dinner together at the dining room table when I was growing up, holidays and birthdays not included. Like a lot of things growing up, it was just one more normal thing I never really got to experience. It was something I was always jealous of other people for, and it became more important to me as I got older and started my own family that I fixed it.

This didn't exactly work out as planned though. When we moved into our house now, I bought a brand new dinning room set and a beautiful rug to match. We needed one for the dining room anyway, but I think part of me secretly hoped that it would give us an excuse to have those family dinners.

Caiden has been in school for a month now and those conversations are not happening. Instead, our meals usually consist of me holding a spoon in his face and begging him to take just one bite, and to please, not spit it out. When your four year old still can't feed himself, normal things like that kind of get forgotten.

Honestly, the particulars of what he did at school that day is the last thing on my mind when we're having dinner. On the walk home from school in the afternoon, I hold his hand and ask him how school was. I know he can't answer me.

He tells me "school," when I ask if he had a good day at school.

He tells me "side," when I ask if he went outside.

He tells me "fun," when I ask if he had fun, and for a second that's okay, because in his backpack is a parent-teacher communication sheet that should tell me what I want to know. When we get home I'll be able to look at it and tell what he did.

I was really nervous about him starting school, but after an extremely anticlimactic IEP meeting, and a good classroom environment, we felt pretty good about him starting. His first couple weeks were tough, but now that he's gotten used to going, he gets really excited when its time to get ready for school. This week, he didn't even look back at me when I dropped him off, he just let go of my hand and walked right in the door. Its good to see him so happy about school.

However, outside of the communication sheet, I have no idea what's going on while he's there. At the beginning of the week, I get a 'newsletter' about what they're focusing on for that week. Its usually a letter, number, shape and color, along with the name of whatever book they're reading. He's brought home a few worksheets he's done with an obvious amount of help, and a few pictures he's colored.

The first few weeks it seemed like things were going well. This week was completely different.

Today, Caiden came home from school with a bump on his face. His parent-teacher communication sheet is almost empty for this week, and today, there was absolutely nothing written on it at all. From what I could tell, his teacher wasn't even there today. Its not a huge mark, but its right next to his eye, and I have no idea what happened. I don't know if he fell. I don't know if he walked into something. I don't know if another kid hit him. I know its not a bug bite, but other than that, I have no idea.

Yesterday, he was in tears by the time they released him to me. At the end of the day, the kids line up inside and are dismissed a few at a time. Caiden doesn't understand this. He knows that he gets to go through that door and go home. He doesn't know why they're making him wait and why he can't rush through the door immediately. So they make him wait his turn. Which, I am perfectly fine with. He needs to learn how to wait, however, it is unacceptable to let it get to the point where he is sobbing. He doesn't understand, and making him wait until he calms down is counter intuitive. He isn't going to calm down until you let him go.

When we enrolled Caiden in school, we were very upfront about him not being toilet trained. His development is significantly behind, even by their psychologist's standards, and he's no where near ready. They stated they were very willing to work with us on it, and that it was our job to provide them with pull-ups instead of diapers. Not a problem. The sooner he is potty trained, the happier I'll be. However the school doesn't seem as on board as they first seemed. Monday, Caiden's pants were wet. He'd peed through his pull-up. He hadn't been changed. They haven't changed him a single time since he started school. He's only there for two and half hours, and we live half a block away, its "not a big deal" for him to wait. I know he's afraid of the bathrooms. I know its going to be a huge adjustment, but I'd rather they piss him off and change him, than let him sit in a wet pull-up for hours.

Thankfully, parent-teacher conferences are coming up. I like his teacher, I really do, however I can't allow this to continue. The lack of communication is absurd. He's in a small class with two para's in addition to her. There's no excuse for a communication sheet to be left empty when they know its the only way for us to have any idea what's going on. Caiden can't tell us what he did at school. We can't have those conversations with him when we don't know anything. Caiden doesn't get homework, but I know how important it is to continue at home what he's doing in school. We can't do that if we don't know what's going on in the classroom. It may have just been a little bump this time, but how can I trust them to let me know if something bigger happens? He can't tell you when he needs to be changed, and its apparent they aren't checking him. We've been lucky that he's only peed while there so far, but should he have a bowel movement and he comes home dirty, there will be hell to pay.

I was told that Caiden's elementary school is one of the best in terms of special education in the area. So far, I have been gravely disappointed.

Sunday, June 19, 2016

Caiden's Birth Story

Today is my 4th HELLP-versary. Four years ago today I was diagnosed at just 31 weeks with severe preeclampsia and Class I HELLP Syndrome, a rare and all too often deadly condition. It is the day that catapulted us into the preemie world and having a special needs child. As the years have gone on, my memory has faded, but there are some things I will never forget. This is something I wrote shortly before Caiden's first birthday, with a few factual edits.

As Caiden's first birthday is fast approaching I find myself thinking back to his delivery and time in the NICU. Its hard not to think about how his story began as we approach the anniversary of his surprise arrival. He's come so far in such a short period of time, I can't imagine being more proud of him.

I remember the day I went into the hospital, I was prepared to be sent home like every other time, expecting to be told my pains were normal and to rest. I was in excruciating pain, unable to stand or sit up right. I wish I had taken one more picture of my belly before laying down in that bed. I had no idea I wouldn't be allowed to move the next three days. I remember my doctor coming in and telling me what was happening in two seconds flat before walking out. I didnt understand. Before they started an IV I asked if I could get up and walk around for a minute. It was the first of many No's I would be told over the next few days.

I remember calling my mother and bawling as I told her I was probably going to have a c-section and begging her to fly down as soon as she could. I remember crying as the nurses dug around my veins trying to put an IV in both my hands, failing to numb one and then finally putting it in my wrist apologizing profusely, leaving me with a scar I still have to this day.

I remember watching my husband walk in, still in his work uniform and the scared look on his face as I repeated "I'm sorry" over and over again. All the conversations we had about viability and promising the likelihood of an early delivery happening to us was slim, turned into lies.

I remember the ambulance ride as I was transferred to a hospital with a NICU. It was the first time I'd been in an ambulance. The paramedic who sat next to me and held my hand, telling me stories of his own preemie. I remember the blood pressure machine that sat above me and the sorrowed look on his face every time he read the number. I remember not being able to stop the tears from flowing as I wondered if I was going to walk out of the hospital I was headed for.

I mercifully, don't remember much of my labor. It was three days long and the pain of multiple organ failure grossly out weighed the pain of contractions. I do remember as I was getting ready to push the nurse told me not to, I was supposed to wait but I didn't have a choice. He was ready to come.
I remember kicking the doctor in the stomach who was there to catch him.
I remember dozens of people walk in as I was pushing, waiting to evaluate what was wrong with my child.
I remember him crying and how happy I was to hear that wonderful sound. I relaxed and for a moment, for the first time since being told I was having him early, I felt at peace.
I don't remember him being held up by my face so I could see him, or the comments I'm sure were made about my practically dead placenta.

The first 24 hours after his birth went by slowly. I was torn between resting and wishing I was allowed to get up and go see him. I was refusing pain meds, I didn't hurt. I didn't understand why they wouldn't let me out of bed, but I suppose stroke level blood pressure is as good a reason as ever.

The first time I was allowed to go see Caiden, I was insanely nervous. I didn't know what I was going to see. I didn't know how small he was or if the steroids had been given enough time. I'd never seen a premature baby before. As I was wheeled out of my room, and down a maze of hallways we passed two nurseries. I remember smiling at the sleeping babies and wishing my son was in there, chubby and healthy, just waiting to be brought back to me. I remember how lost I was going through the hallways. I had never been in this hospital, I didn't know where anything was, I didn't know what the inside of a NICU looked like. I hadn't seen anything but the walls of my room for days.

As we rounded the final corner we approached a large set of double doors with a corded phone on the wall. I remember my mother who had been already, telling me I had to let them know who I was. The doors stayed locked and shut at all times. We were buzzed through and I saw the hand washing station for the first time. It was automated and the most bizarre thing AI had ever seen. I was amazed at the setup. We passed through another set of double doors and entered the NICU.

It was a large room divided into sections by walls and curtains. It was dark, yet warm and monitors could be heard beeping throughout. I knew my son was in that room somewhere but I didn't know where. I wanted to run to him. We turned another corner and there was a raised glass table with a blue light shining on it. The smallest baby I had ever seen was laying on the table on its belly, completely naked except for a diaper, hat, foam block out glasses and tons of wires attached to him. He looked alien.

I remember the nurse smiling at me and saying "so you must be mommy," it was the first time someone had used that term in reference to me. It felt weird to me, I certainly didn't feel like a "mommy." I stood up and met my son. I remember feeling an overwhelming urge to cry and tried my hardest not to. The smallest baby I had ever seen was my son. Sleeping, unaware I was there next to him. I just stood there for a minute, I had a hard time believing that was my baby. The nurse said something I will never forget. She looked at him and noticing my hesitation, she said "you can touch him."

I never thought I would need permission to touch my own child but those words were the sweetest words I'd ever heard. After being told no to everything the past few days, it was amazing to be granted permission for something, especially something so important.

I remember regretting sitting back down in the wheel chair and having to go back to my room for meds and rest. The short trip had taken a lot out of me and while I never wanted to leave his side, I knew I needed to rest just as much as he did.

The trip to and from the NICU would become routine in no time. We started parking in the same spot. The receptionist knew us by name and was excited for us when we finally left. Caiden's doctor knew what time to expect us and would stop by every day to give us an update personally. Day by day we watched the machines get turned down and eventually disappear.

I remember his doctor better than I remember the nurses. Dr. Craig Anderson. He is an amazing man. He was there whenever we needed him, he encouraged me to pump and breastfeed, he made it possible for Caiden to go home ahead of schedule. He was excited to see him again when we went back a month later to pick up my extra milk. I can't wait to see him again someday and say thank you. I never got the chance to say goodbye and thank him for all he did for us.

I may not have the best memory, but I remember what's important. I'm glad Caiden won't have any memory of his time in the NICU. I'm glad he'll grow up knowing he did something amazing as a baby. He survived. And each year on his birthday we will celebrate his life, not mourn the time we lost. Each year we will celebrate how far he's come. Each year we will move one step closer to normality and one step further from premature.

When I wrote this three years ago, I had no idea the problems we'd continue to face. I can't even begin to count how many times I've had to repeat his birth story to doctors and have to emphasize that he wasn't the sick one, I was. He was healthy for a preemie, I was the one who was dying. Its not fair that some of his struggles are likely due to his prematurity, but a majority of them can't be explained away by it. We may never know why he struggles, or why I got sick.

Hes not the child I imagined him to be when I was pregnant. I never expected him to have the medical issues that he does. I'm more proud of him today than I have ever been before. His struggles run deep, but he's overcome so much and is the happiest kid you'll ever meet. Today is a hard day for me. The day my guilt creeps back in. I don't know if I will ever forgive myself for the way his life started, or my horribly neglectful doctor for that matter. Caiden won't remember it though, he may never understand it, and that's all I can hope for. He shouldn't have to live in the shadow of his prematurity, and hopefully his development continues to progress at the rate it has been lately.

He's going to be four on Tuesday and starting school this fall. Its incredible how far he's come in the last few years. Its hard to imagine that he was once that little baby on the warming table attached to more wires and tubes than I knew was possible.

Thursday, May 12, 2016

Neurogenetics Update!

On Tuesday, the 10th, Caiden had an appointment with Neurogenetics to meet the new neurologist (this is our third neuro) and follow up with the geneticist we saw about a year ago now.


Dr. A, our previous neuro who we saw in December, was concerned about Caiden's most recent regression and ordered another MRI (which we had done the end of January). He wanted us to bring both to Dr. P, the new neuro for comparison. His most recent MRI showed changes from the first so there was some concern about what it might mean.

Both MRIs are being sent to radiology so that they can be looked over thoroughly before Dr. P formally diagnoses him with anything. We should hear from her by the end of next week, however she was able to look over them briefly and gave us her preliminary findings.
According to her, the problem with Caiden's brain is likely due to an injury at birth, and most likely not a degenerative condition (yay!). Developmental delays, hypotonia, and toe walking are common in preemies, and a brain injury could possibly explain these. It is clear that one side of his brain is more affected than the other as he has always favored his left side and both MRIs support this. His new MRI showed an asymmetry of one of his ventricles that was not present in the first MRI, along with white matter changes.

The way she explained it, is that the scar tissue caused by the birth injury surrounds the ventricles. As Caiden has gotten older, the brain has replaced some of that scar tissue with fluid. This makes the ventricles get bigger and the brain appear to be smaller, even though its only the scar tissue that's affected (this is pretty much an explanation of PVL, what Dr. A. suggested but never formally diagnosed). He also has excess fluid surrounding his brain in the space between his brain and skull. She doesn't believe this is what's making his head so huge, but its not growing significantly between measurements. As long as the fluid remains the same or lessens over time, and his pressure remains normal, we aren't looking at anything radical like surgery to reduce it.

Aside from going over his MRIs, she also did a full exam to check him out and noticed his hypotonia and toe walking immediately. She's encouraging us to continue all of his therapies and to talk to his physical therapist about whether or not he's going to need braces or special shoes to help with the toe walking. One of his hamstrings is tighter than the other and we don't want it to get any worse.
She also believes that while some of Caiden's issues are related to his birth and prematurity, it does not explain away all of his problems. She has recommended we pursue further genetic testing.


Our geneticist, Dr. W, actually remembered Caiden even though we'd only seen him once before. We met with him after we saw Dr. P. He agrees and also thinks we should have more testing. We already know Caiden has a duplication on his 10th chromosome, but there's not much known about the specific gene. There are a few cases reported where it could be connected to speech problems, but there's not enough research about it to know if this is true in Caiden's case.

He suggested we do an Autism and Intellectual Disability Panel. It looks at 2,000 genes either known or suspected to be related to Autism and ID's. After this test, if we choose, we can do Whole Exome sequencing with looks at all 20,000 genes. We did decide to do the the Autism and ID Panel, but are waiting on whether or not to do the complete sequencing, so he is sending it to insurance for approval. Once its approved, Caiden will only need a simple blood draw, which he does fairly good with, and then we wait. Results can take several months to receive.

One of the things I love about Dr. W though, beside his amazing bedside manner, is he works closely with the medical research facility who will be looking at Caiden's DNA. He has an amazing track record and will actually be involved in the testing process. Should we find something with this test that is not well documented, we have the added bonus of him being able to research the affected gene(s), and hopefully coming up with an answer either now, or years down the road when more information is available. We're obviously hoping for the sooner the better, but we'll take what we can get.

Caiden is scheduled to go back to the Neurologist in a year unless we have further concerns or if she needs to see him regarding what she finds when looking over the MRIs more closely. We did not get a time frame from the geneticist about how long it would take to get the test approved, but hopefully it will be soon.

Caiden measured in at 3'8" and 46.5lbs!

Monday, April 25, 2016

Huge April Update!

As Autism Awareness month winds down, I figured now would be a good time to give a little update on Caiden, especially since we have some BIG news to share!

Caiden has made leaps and bounds in his development lately. He has almost met all of his short term goals for OT, such as drawing a circle and straight-ish lines. He has also been showing more signs of sensory seeking instead of avoiding. In PT, he has finally mastered catching a ball, and jumping, managing to get both feet clear off the floor! He is very proud of himself for this, as he should be ;) However, it is ST that he has shown the most progress in recently. Caiden now has more than FIFTY - yes, fifty! - words he can say!! These include "mommy" and "daddy" which he had not said in roughly a year!

While we are extremely excited about how much he's improved lately, we are still keeping a close eye on him. He is prone to regressions, so we're hoping that a lot of his new skills stick around for a while this time.

The developmental pedi gave me some paperwork on IEPs so we can get him enrolled in school this fall. He's going to need a one-on-one aide and still isn't potty trained, so we've got a lot of work ahead of us. I personally think he's going to have a rough few days once he first starts trying to get used to it, but I think after that, he's going to love being in school.

Because Caiden has done so well lately and is showing so much progress, the doctor decided that he doesn't need to go back to see her for a whole entire YEAR!! She still wants us to keep her updated and to go in if something comes up, but as long as he continues to do well, we only have to see her once a year.

Today he weighed in at roughly 45lbs (97th percentile) and is 3'7" (99th percentile) and........ he let them take his blood pressure!! Caiden has only tolerated having it taken ONE other time, and today he didn't really care, just got kinda wiggly. It was a perfect 100/60 too!

Our next big date is in just two weeks when we go back to neurogenetics and meet the new neurologist to go over his last MRI. Hopefully we'll continue to get good news!

Sunday, December 13, 2015

A Very Special Santa

This morning, a local mall hosted a Sensitive Santa event. Open to kids with autism and other special needs, it took place before the mall officially opened for the day. The lights were down, there was no music playing over the speakers, and no shopping bags to trip over. There was a Christmas movie playing in one corner and a table filled with arts and crafts in another.

At the center, there was Santa. Sitting in his green suede chair in front of the largest Christmas tree I had ever seen, he exchanged kind words with brave boys and girls. I can imagine what they talked about; the new toys they wanted, and if his beard was real. Words and phrases Caiden may never say.

We knelt in an empty area, still close enough to see the Big Man, but not be in the way as we attempted to soothe Caiden out of a meltdown. We had gotten almost all the way to the check-in table when he lost it. I had tried desperately to hold back the tears as I gave the woman our name, failing miserably, it took several attempts to get an audible response out.

For fifteen minutes, we rubbed circles on his back, offered toys and snacks and to carry him, and try to protect his head while he writhed on the floor. He didn't want to leave, but he didn't want to be there either.

I cried some more, but I wasn't embarrassed. He had done so well last year, even been excited to see Santa, but the effects of his most recent regression were out in full force. He was going to miss out on something he had enjoyed because his diagnoses got in the way. It wasn't fair, it made me angry seeing just how much he had lost to his mysterious condition. He deserves a magical moment as well, especially with how hard this year has been on him, I wanted him to have that.

The woman who seemed to be running the event (I wish I'd gotten her name) pulled up videos on her phone to try and distract him. It didn't work unfortunately, but she was determined to help us.

He eventually noticed a few balloons on a shop sign and she allowed him to play with them. He immediately calmed down, even bouncing them back and forth between the two of them. Playing with a complete stranger, he was happy.

We tried again to approach Santa, but he simply wasn't having it and began to get upset so we backed off.

Then she hit us with it.

They were working on getting him more balloons. If we wanted to wait a few more minutes, we could lure him in front of the camera with them. Definitely worth a shot.

It worked.

He was still nervous, to the point that he crawled in front of Santa to get to the balloons, but he smiled. His face lit up and we were able to get a slightly candid, slightly staged picture of them. It was perfect. As quickly as he could, he ran past Santa to show daddy his balloons, but they'd captured an amazing moment.

Santa held his hand out to me and gave me a hug and pat on the back. He said Caiden was a great kid and we were doing awesome. I sobbed some more and went to pick out our pictures.

When Santa says you're doing a good job, you just can't help but believe it.

I expected him to have a hard time, but I wasn't prepared for just how difficult it would be for him, or how perfect his picture would come out despite the obstacles in getting it. Before we left however, I made sure I thanked the woman who went out of her way to get Caiden some balloons so we could have such a magical picture. I hugged her and we both cried together just watching how happy Caiden was with the balloons.

As we were walking away, I heard her say to the cameraman, "that's the reason why we do this."

And I'm so incredibly thankful there are people like her who do.

Saturday, November 7, 2015

November Update

We have spent the last several months trying to get Caiden stable, and so it's been quite a while since I've updated. Not much is new, and so far, I have mostly good news to share.

Over the summer, Caiden went through a very rough patch behaviorally, and we made the difficult decision to start medicating.

Our first attempt was a low dose of Zoloft. It worked well for a couple weeks and then things got really bad. Caiden lost most of his speech and began having outbursts that were unusual, even for him. He regressed back to hitting and kicking, and the repetitive behaviors got a lot more severe. We were unsure if it was a result of the medication or if Caiden's condition was getting worse. We decided to try a different med in the hopes that that was the problem.

Currently, we are finishing up month three of Remeron and I cannot say enough good things about it. Soon after stopping the Zoloft, Caiden's speech returned (his doctor said she'd never seen it as a side effect before), and in the last month he's learned several new words and is vocalizing more than ever. His behavior is phenomenal, with the exception of a couple tantrums every now and then, but we can live with that. He is back to being his old happy self, just with more stable moods.

It doesn't appear that his condition is getting any worse right now, and we are incredibly thankful for that. His overall progress has plateaued a bit with the exception of his speech, so he is still roughly at the development of an 18 month old. Unfortunately though, he has been sick, a lot.

We've made several ER trips in the last two months which ended up being for simple problems such as an ear infection and inflamed intestines. Though his tiny vocabulary is growing, because of Caiden's lack of communicable speech, when something is wrong we have no way of knowing what or how severe it might be. The only way to know for sure, is to have him checked out by a doctor and begin ruling things out. It's a time consuming and more often than not, unpleasant process.

As far as diagnostics go, we're kind of in limbo right now. October marked a year since we received his Autism diagnosis, but we still have a lot of questions. He is scheduled to return to the neuro-genetics clinic the beginning of December and we will be discussing the possibility of having further testing done. He is stable right now, so we don't feel as if we need to press as hard for answers, however we are still as determined as ever to get them.

We are excitedly getting ready for Christmas. We've found that preparing for holidays early helps Caiden adjust to the change, so we've already broken out the Christmas movies. So far he's not too interested in them, but I'm hopeful he'll come around soon.

Tuesday, May 26, 2015

Seven Months

An open letter to our son's former pediatric neurologist.

Dear Dr. M.,

You probably don't remember us, after all, its been seven months since Caiden's last appointment with you. Seven months since we sat next to you and begged for you to listen to us. Seven months since you dismissed our concerns about absence seizures. Seven months since you threw two opposing, and impossible diagnoses at us. Seven months since you declared our son's atrophied brain didn't require a follow up, and that we'd be better off seeing a geneticist. Seven months that you have failed to return our phone calls.

Like I said, you probably don't remember us, and we won't be back for a follow up, so let me refresh your memory and show you why our story should be important to you.

We came to you after an abnormal brain MRI left our pediatrician (and us) seriously concerned about Caiden. We were just trying to rule out cerebral palsy, what we found was much worse and started us down a diagnostic rabbit hole.

His brain showed atrophy.

Had you taken more than the five minutes you spent skimming over his MRI, you would have seen the real damage, you would have seen the holes. You would have diagnosed him with cerebral palsy and periventricular leukomalacia. You would have saved us from months of heartache and financial strain.

But you didn't.

Instead, by your inaction, for seven months, you let us believe that Caiden's mysterious brain condition had the potential to be terminal after we'd ruled out all other possibilities. We may be young and still somewhat new parents, but even we know why they save those tests for last.

That's where you left us; waiting for the hammer to strike, waiting for a prognosis, and not necessarily a diagnosis. Waiting to find out if the atrophy was progressive, and how much longer we'd have with our son. For seven months, I was scared to put Caiden to bed, afraid he'd have passed in his sleep, afraid each day could be our last.

Trust me, its a terrible way to live.

Last week, however, our pain was finally lifted. We had an appointment with a Neuro-Genetics team who thoroughly examined his MRI and saw clearly what you missed. We're just waiting on a confirmation, and we can add those two diagnoses to his list, while we remove two of yours.

Two completely manageable, non-degenerative conditions. Under normal circumstances, they would have crumbled us, but instead, it was an incredible relief.

I don't know if you have children. I don't know how long you've been a pediatric neurologist. I don't really care. What I do care about though, is that you know that you failed us. In every way a doctor can fail their patient.

Not because you got a diagnosis wrong, but because you didn't care enough to try and get it right. You have to care about the people who come to you for help. If you don't, you leave them in positions like the one you left us. Thankfully, we had others who took our concern seriously, and friends and family to stand by us.

Our story turned out alright. Our son's conditions are not terminal. If they had been, and we trusted your judgement, would you want to live with the guilt that you did nothing? How many others have you failed the way you failed us? Can you live with that number?