I want to start off by saying a huge thanks for all the support we have gotten through this whole long ordeal with our sweet Courtney. The thoughts and prayers were very comforting especially these last couple days. I know I have written about it a few times now, but words can’t even come close to explaining the toll the past 2 months have taken on our family and all who work with Courtney. It is such a relief to know we are on our way to recovery.

Two days ago, Courtney had a big day at Lurie Children’s Hospital. She had both X-Rays and Lab word done to diagnose the lesion found on her femur and she had an appointment with a urologist to see if we can get a better grasp on what has been going on. Courtney was beyond amazing during our adventure. She loved the train ride downtown, tolerated the craziness at the train station and tolerated the long wait at the office. I couldn’t have asked her to behave any better. Of course she struggled with the blood word and X-Ray but what little child wouldn’t. Thanks to my sister and great lab/X-Ray technicians, she got through it.

Those who follow me on Facebook know that we found out, the UTI’s that she has been having were actually not UTI’s. What? Not UTI’s? I’m actually not surprised by this because each time they diagnosed her with one, they explained how the test showed it really wasn’t one but since there was some bacteria and she was showing symptoms they treated it as one. So why has she been in so much pain? Courtney has chronic constipation issues. Always has and probably always will. Because she is so backed up she is having what is called bowel spasms. Basically…in laymen’s terms her colon is freaking out because it is so backed up. Cure? Miralax and lots of it. AND…it’s already working. Since Sunday afternoon, she has been a completely different child. Our happy little girl is back.

As I mentioned in a previous post, a lesion was found on Courtney’s femur. No matter how many times you are told it is probably nothing, hearing that your child has something growing on her is beyond nerve wrecking so needless to say I was nervous about these results. Thankfully, at this time it is nothing to be concerned about. It does require some follow up just to make sure it doesn’t grow, but rest assure, she is fine.

So now comes the time to recover. Not only for her but for us as a family. Even little Alyssa got use to us saying “Courtney is sick”, or “I have to take Courtney to the doctor”. This has been our life for 2 months. It is never fun seeing your child sick or in pain let along to have to watch them suffer for longer than your typical illness period. During this time we have seen regression across the board so now we have to help her get back to where she was before this started. It won’t be a quick bounce back to the way things were but seeing her happy again will make it easier to start treading forward. I will now probably stress more about her regularity than I ever have before in fear that we will see the behaviors again.

Again, I can’t thank everyone enough for their love and support during this time. A huge thank you to my sister who joined us for the adventure down town, my team at school who kept things going while I was on my short leave, all those who helped keep Courtney comfortable during this time and not losing their patience as she got very aggressive, Her caregivers who had to put up with a lot and Joe and Alyssa for putting up with my insanity as my stress levels were through the roof!

I am not one to ask for thoughts and prayers. I don’t like to draw attention to myself that way so at first I wasn’t going to share the latest obstacle. But up to this point, I have gotten good at being an open book with our journey so why not continue by asking Team Courtney for those thoughts and prayers,

As I have shared, Courtney has been in a real rough patch for over 2 months now. The cause being reoccurring UTI’s or at least we think. I won’t go into the details of how many urine tests she had with mixed results which is why we aren’t even for sure if she has had true urine infections. I’ve been asked several times by doctors throughout this whole ordeal if she is telling us it burns when peeing. No, she is non-verbal, I am purely basing it on her non-verbal behaviors. And let me tell you, her non-verbal behaviors have been frequent and very telling. She is in pain!

The one thing I noticed each time there was an increase in behaviors is it happened a couple of days after she had issues with constipation, which is a chronic problem for her. Those who struggle with constipation are more prone to UTI’s. So we went back to the  GI doctor. Sure enough, X-Rays showed she is backed up. I’ll spare you any other details regarding that! But something else was found on the X-Rays. They found a lesion on Courtney’s left leg. It was the nurse from the GI doctor who called and all she told us was she was going to send the scans to her primary doctor who can decided if we need to see an orthopedic.

I hung up the phone and immediately googled lesion on leg. I needed to know exactly what they meant about that. As Doctor Google does a good job doing, the internet freaked me out. Fortunately my family has a connection to a pediatric orthopedic. I quickly took advantage of that connection. She calmed my nerves but did say a full orthopedic work up was needed.

So Tuesday we have a pretty big appointment. Courtney and I will be headed to Lurie Children’s Hospital for an appointment with a urologist and will also be doing some additional scans and lab work to diagnose the lesion. So Team Courtney…send those thoughts and prayers.

Of course I’m scared but thankful for our connection who has fielded a few freakout messages. Her responses are keeping me from thinking only the worse. It is also helpful to already know she will be in GREAT hands. I am also hopeful that maybe we are approaching the answer to all her discomfort. Tonight I saw a glimpse of things starting to improve. I’m pretty sure recovery won’t be quick though. This poor little girl has been traumatized by so much pain with no way functional way to communicate it. Even during the days where we knew there wasn’t an active infection, you can see the panic in her eyes any time she needed to pee. But as her mom, it is my job to fight for her and I am ready to fight her fight until we see her happy giggle more consistantly again.

Monday: ABA 1:45-3:45; speech 5:45-6:30

Tuesday: ABA 1:45-3:45; physical therapy 4:00-5:00; Feeding therapy 5:00 pm-6:00 pm

Wednesday: ABA 1:45-3:45, 5:00 pm-7:00 pm

Thursday: ABA 1:45-3:45

Friday: ABA 1:45-3:45, 5:00-7:00

Saturday: ABA 9:00-12:00; Horse Therapy 2:20-3:30

Sunday: Occupational Therapy 4:00-5:00

There you go. Courtney’s schedule (that goes not include school 8:30-1:30). Every minute of every day is scheduled. I had a meeting with one of my student’s parents recently where we told her that her child has autism. She asked me if she should be putting her son in any outside therapies. I’m very transparent with my student’s parents on my experience as a special needs mom. When she asked this question, I made sure I answered honestly and from both roles that I play. The teacher side told her that outside therapies will only help. The mom side told her that outside therapies have done so much for my daughter but be prepared that it adds a lot of stress. It is not easy keeping up with the on the go schedule that private therapies require. I told her at this young of age it’s probably harder on the parents/caregivers than the child. At this young of age therapy is very play based so the child is usually having a lot of fun. I felt like I had to share this. This part of being a special needs family is exhausting.

This Saturday we didn’t have horse therapy. Horse Therapy is an hour away so it gave us a HUGE chunk of downtime that we are not use to having. I was sitting on the couch cuddling with Courtney who was struggling while Alyssa napped. I asked myself at this moment why it felt so strange to do this. That’s because we typically don’t have downtime to do nothing.

So why don’t we back off on the therapy if it’s that exhausting? If it weren’t for these therapies, I’m pretty certain Courtney wouldn’t be where she is today. Thanks to ABA, I feel like we can be outside with Courtney without her running off on us. Thanks to speech therapy, Courtney is able to communicate her wants and needs. Thanks to occupational therapy, we have strategies to help keep Courtney regulated. Thanks to physical therapy, Courtney’s core strength has increased. Thanks to feeding therapy, Courtney is slowly but surely becoming more willing to try new foods. Thanks to horse Therapy, there is an activity my family can do as a family. This is just a dent of what they have done for us.

We don’t have the crazy sports schedule. We don’t have the car sticker that says soccer mom. Though I do think there should be a car sticker that says therapy mom. This is our life. It is exhausting but we are beyond grateful.

A dear friend of mine who has a child with special needs referred to me as a mighty warrior mom in a text she sent me. She sent this message to me in response to an update I sent her on Courtney. This message didn’t come long after I spoke with my bosses about taking some time off of work. In a moment of self pity I asked myself if I was worthy of being referred to as mighty warrior mom if I had to emotionally admit defeat and take time from work.

I didn’t let the self pity last long. I reminded myself of the oxygen mask analogy. When on a plane, if a flight attendant sees a parent with a child during their safety presentation, they will go up to the parent and remind them that in an emergency to put on their own oxygen mask first then the child’s oxygen mask. But how do you put that oxygen mask on you first when you have little children with so many needs?

I have spent the past two months watching my little girl who can not express how she feels suffer with reoccurring pain. It has been so heartbreaking to watch. I’ve been making phone call after phone call to doctors. I’ve written so many notes and emails to her teachers/therapists that they are probably considering hiring a secretary just to deal with me. During part of this, Alyssa was also having medical issues so add more doctor visits.

I have continued to go to work attempting to teach little kiddos with just as severe needs as Courtney. While working, fielding phone calls, taking any moment I could to make calls to drs when needed, emailing her team and constantly wondering how she was doing. I have felt my performance as a teacher slipping drastically and blamed it on motivation. In all actuality, it has nothing to do with that. Here I thought I was this super hero helping everyone else first but in the end I was not giving them my best because somewhere in these past two months my oxygen mask fell off and I didn’t take the time to put it back on. The analogy couldn’t be more true.

So next week I’m taking the time to put on the oxygen mask. I feel horrible stepping away from my students but in the end, it will benefit them. It will also benefit my family. I’m not staying home to just put my feet up. Unfortunately I think that’s impossible in this stage of life but now that work is off my plate for one week I can fully concentrate on my family and working on figuring out what is going on with Courtney. Thanks to my amazing team at school and a wonderful sub, my students will be in good hands. I can’t thank them all enough!

So let this be a lesson parents…have you taken time to remember to put your oxygen mask on?

Every night I rock Alyssa a little as a part of her bed time routine. She cuddles up in my arms as I rock. I hold her tight as this is our special few minutes together. Guaranteed no interruptions by her big sister who requires so much of my time most days. I hold her so tight in hopes that she knows just how much I love her. I put her in her bed and then rub her back for 2 minutes. After 2 minutes, I tuck her in, say, “good night, I love you,” and blow her kisses as I walk out the door. She blows kisses right back. The past few nights she now says I love you back. She has said it many times before but the past few nights it has just rolled off her tongue and has become a part of our routine.

Every mom loves hearing those 3 words from their child. But there are mom’s out there who say those 3 words to their children every day and never hear it back. I’ve never heard the return “I love you” from Courtney. I know, I know, she tells me she loves me in so many other ways. My favorite line as an autism mom is, “Love Needs No Words”. Courtney tells me I love you at night when I’m cuddling next to her and she scoots a little closer to me. She tells me I love you in her smiles, in her laughter and even in her tears. As true as the statement “love needs no words” is, it still means so much to hear those 3 words back from your child. It’s a little confirmation that amongst all the chaos of a day, amongst those moments where you may have been short fused with your child that they still trust and love you.

Through these last two months of reoccurring UTI’s for my sweet Courtney, I feel doctors have questioned how I truly know it’s a UTI when she’s not telling me it burns to pee. Parents of children who can’t talk have to learn to rely so much on this non-verbal cues. We learn to tune in to those cues. Trust me doctor, I know what she is telling me. Mothers truly know best.

These past two months I’ve wondered if I’m doing everything I possibly can to help her, I’ve worried about the attention it has taken from Alyssa, and more so than ever, I’ve yearned for Courtney to verbally talk to me. I wish she could tell me how she feels and what is hurting. So at night, when Alyssa says “I love you”, I give a sigh of relief. I must be doing something right.

I love you to the moon and back, Courtney and Alyssa!

I kinda have this weird mindset with the medical profession right now and it’s not a positive one. I don’t want to have this mindset. For one, it’s such an important group of people. Honestly, what would we do without them? Second, if it weren’t for the amazing knowledge and expertise, I wouldn’t be alive today. So, please, to all of my readers who are in the medical profession, I really do have the utmost respect for you. But, I am running into a lot of obstacles that are leading me to be very frustrated when it comes to doctors for Courtney.

At first sight, Courtney is your typical 5 year old. Which means when a doctor who doesn’t know her first comes in to the room they start talking to her like she is a typical 5 year old. Completely expected so I always let this exchange (or lack of) happen. I fully expect when it’s our first time with a practice to have to give the full explanation of Courtney. But after a first appointment in a group I guess I kinda expect it would be easily found in her chart that she does have autism, she is non verbal and she is severely effected by this. Am I way off on this? And if I am, so be it, now I know and I will be ready to give a “Courtney explanation” the first couple times we meet with a doctor. So here’s a question. What can parents like me do to help the medical profession be better equipped to work with kiddos like Courtney (and to work with their crazy parents…lol).

Courtney’s ultrasound went well. No blockage or kidney stones. As much as I relieved there wasn’t a bigger problem, I was very frustrated after the appointment. First, it left us without answers. Second, I felt the urologist was not helpful. Our first appointment at this office was actually with the Physician’s Assistant who I that was AWESOME. The ultrasound was with the actual dr. He seemed unaware of her autism and the background of her issue. Did the ultrasound, saw no issues and sent us on our way with suggestions like, “encourage her to empty her bladder and to pee more often”and “have her eat more fiber rich food to help with constipation”. Oh but doctor, if only it was that easy!

I will add it was a long wait and Courtney was beyond done (and so was I) so I did not take the time to ask about some of the more helpful suggestions the PA brought up at our first appointment. Shame on me. But I’m also perplexed why I have to completely recap past visits with others in the practice. Isn’t this in the charts? Again, I don’t want to be frustrated with this profession. Help me understand why this isn’t as easy as reading the charts?

Positive note…Courtney’s last tough day was Friday. We have now had 4 great days in a row. Teachers, therapists and caregivers have reported that Courtney seems herself again. I’m hoping the last round of antibiotics finally got rid of any bacteria buildup. We are still noticing some fear when peeing but she is peeing more regularly again. I am hoping this is behind us now but I can tell you, it is not forgotten. The past 6 weeks have been hell. It will be hard to forget seeing how much pain she was in, hard to forget the bruises it left on her and hard to forget how completely helpless I felt. I am hopeful the preventative antibiotic will keep this from happening again anytime soon. I thank her (and my) amazing support team for all their love and support during this time.

It was five years ago that Joe and I were still trying to adjust to being parents. It was about this time 5 years ago that we were trying to get through Courtney’s colicky days. It was so difficult as brand new parents to watch this tiny human being that you were suppose to be able to care for just cry hours upon hours with absolutely no way to communicate why. Five years later we still have this little girl who is unable to communicate discomfort in any other way but crying.

The past 6 weeks have slightly reminded me of her colicky newborn days. Fortunately it has not been entire evenings of unconsolable crying like it was 5 years ago but it has been frequent episodes of unconsolable crying through out the day. It kills me that she has been suffering on and off for this long and I have not been able to fix it. Several phone calls from school and therapists, several dr appointments, more phone calls to drs than I can count, several urine tests and no answers. Monday we finally have an appointment that will hopefully lead us to some answers. She will have an ultrasound of her kidney. For a typical 5 year old it may not be too bad of a process but for Courtney (and me), it will not be easy. Hopefully we will make it through the test with limited bite marks.

Tonight I cuddled next to Courtney as she fell asleep so thankful for a good weekend after a very tough Friday. Thankful that we found a specialist willing to do more than a urine test. Frustrated that she’s been going through this for 6 weeks and unable to help her. Unsure and worried about what we will find out tomorrow.

So Team Courtney…keep my brave little girl in your thoughts and hope that we get some answers soon.

It was an all smiles type of day today. A type of day we haven’t seen in al most 6 weeks. A day with no painful cries. A day with no biting. A day with no meltdowns. A day that was full of happy chitter chatter and smiles. Today, from beginning to end, she just seemed happy and content.

It was so good to see my little girl again today. I’ll be honest, I was still on edge today. I cautiously enjoyed her happiness as I waited a meltdown. I hate that I spent the day awaiting a meltdown but it was hard not to after the weeks we have had. It was becoming routine for Courtney to have a couple severe meltdowns a day. She had one yesterday so made perfect sense to expect one today. So relieved I was cautious for nothing.

We still are unsure what has been wrong with Courtney. The doctors at the pediatrician’s office ruled out a reoccurring UTI and pretty much sent us on our way. We finally found both a new pediatrician and a urologist that are going to help us figure it out. I was so relieved to find these two doctors. They were so supportive of Courtney’s needs and didn’t make me feel like I was losing my mind. At this point they think the UTI that she did have has lead her to have a fear of urinating because of how painful it was when she had the UTI. So her meltdowns that look like she’s in pain are really her fearfully trying not to pee. Before they say for sure this is what is going n, they want to rule out a few things. Today makes me cautiously hopeful that we are past whatever it was before our questions were answered but if today was just a fluke, we hope to soon have answers. For now, I will enjoy every smile she gives us.

It is said that God only gives you what you can handle. I struggle with that thought process. There are times where I want to ask what lead Him to think I can handle this all. Glad He has so much faith in me, but man, there are days I question if I can really handle it all.

The past 4 weeks have been hard. We have watched Courtney struggle with we think is pain but unsure because of her inability to tell us. We’ve watched her express this pain through biting, scratching and pinching. The bruises on her arms and knees from her biting herself were hard to look at. Words can’t describe how helpless I felt during these episodes especially when they happened in the middle of the night. These past 4 weeks I’ve never hated autism so much and I felt guilty for feeling that way. Autism is our “normal” and for the most part, I’m okay with that. But when you are watching your child suffer with the inability to tell you what is hurting and how you can help, Autism can go to hell. Can I really handle this?

Autism isn’t the only obstacle in our life. There is also Alyssa’s food allergies. Joe said the other night, “I am frustrated with whatever is going on with Courtney, but I am more concerned about Alyssa because that is life or death.” He couldn’t be more right. You don’t truly understand how a food allergy can effect your every day life until you are actually effected by it personally. It involves so much more than making sure your child isn’t eating something with their allergen in it. In seven days, Alyssa had 3 allergic reactions. Minor reactions, but none the less, they were reactions. To what you ask? I have no clue. That is what makes having food allergies hard. No, Alyssa did not eat anything in these situations that she is allergic to. BUT…did she touch something that had tree nut or egg residue on it. For some people, that is all it takes. Think about how many things you touch during the day that someone else has also touched. That is how many times a day someone with food allergies has to worry about having an allergic reaction. That is how many times a day a mom of a child with food allergies worry about their little child having an allergic reaction. Can I really handle this?

The past 4 weeks have left me feeling defeated. I felt like the world was crashing down on me with each phone call from caregivers, teachers and therapists. The past 4 weeks have left me questioning if I can truly handle it. Then today I got the most beautiful pictures from our nanny. They were pictures of the girls playing at the park. Pictures of them smiling and having a ball. Something about Courtney in these pictures looked different. She looked pain free! Maybe things are calming down finally. Maybe we are returning back to our “normal”. Maybe, just maybe, I can handle this.