Thursday, February 26, 2015

What is normal, really?

It's been a long week. Monday seems like a lifetime ago and yet, it's only been 4 days. Blake's procedure on Tuesday went beautifully and while there were some peripheral findings, it was nothing serious. Just another reminder that he is special and not "normal".

Last week we went to the dentist. All three of us, but it was Wesley's appt. We have been seeing the same dentist every 6 months in the same office since Wesley was 2 and we really like them. They are kind, the office is inviting, kid friendly and everyone is so wonderful with both the boys. Wesley has never been a fan of the dentist. Really, I don't know too many people that love to go, but we do it. Because it's important. Last week for him was no different. I will spare you the details, just suffice it to say, things did not go well, there was a lot of crying, a lot of patience on the part of the staff, 2 out of 3 Hassmers left in tears and the afternoon called for a nap. For everyone.

Fast forward one week. I went to a consult with our pediatrician on Wednesday night. This is something I do on a regular basis to keep her up to date on all of Blake's appts with his specialists. It's just her and I in her office for hours after the clinic closes bouncing ideas off each other, planning, her explaining doctor terms to me and me getting a better idea of what's to come. I couldn't ask for a better pediatrician and friend. She really has been a blessing. Last night, I brought Wesley's serious meltdown at the dentist to her attention. She listened intently to all the details and then started asking me about other times he might show the same symptoms. I thought about it... and I came up with a whole list.

1. My sweet 5 year old has never liked getting his hair cut. The sound of the clippers frightens him. The moving of the chair frightens him. He cries.
2. The dentist has always been a scary thing. The chair leans back, the lights are so bright. The sound of the tooth brush is awful. Flouride makes his mouth feel funny. He gags.
3. He has NEVER liked any of those rides at the mall. You know, the 50 cent ones that you put your child on and then wipe them down from head to toe? He hates the idea that it would just start moving and he would have no control.
4. As a baby he never tolerated riding on David's shoulders. It was too high. too scary.
5. At 5 years old we have just recently come to a place where he is okay having his hair washed with a cup. Before now, there were always tears. Water in his ears, water in his eyes, meltdown.
6. "No, thank you" bites are a staple in our house. Every one tries something that we have for dinner. Wes is normally pretty good about this, but some textures just don't go over well. He vomits. And dinner is done.

We came to the conclusion together that he has a serious sensory problem. Sounds, textures, tastes, lights and movement have always been triggers for him and we are just now putting the puzzle together. These things scare him. They cause a type of fear that isn't normal for a little boy his age. These feelings of fear turn into anxiety and my strong, happy, tender-hearted pre-schooler is reduced to tears and shaking and worry. And I hate it.

At the suggestion of a friend and my pediatrician, I made a phone call today to have him evaluated at Children's Hospital of Richmond by an Occupational Therapist. If he qualifies for therapy, it would mean going to see them on a regular basis and through play, pretending, re-enacting, art and discussion they could give him some ways of coping with his surroundings when he feels scared, or anxious or concerned. We feel like it is a good idea to start this now so that when he is put into a Kindergarten classroom in September and is on sensory overload, he will have the tools to work through his anxiety should that happen.

Wesley is my normal kid. When people ask I always say that I have one special needs and one typical. I'm not saying Wesley has special needs and I'm certainly not labeling him with any type of disorder or syndrome. I'm just feeling all the feels that come with the realization that my "normal" kiddo, my baby, my sweet boy, may not be as "normal" as we originally thought. And that's hard.


Tuesday, February 17, 2015

The Great Divide

Today was a good day. It was a really good day. This morning we made a big breakfast complete with blueberry muffins, bacon, cereal and juice. Blake ate a ton of bacon, a bite of blueberry muffin, a handful of cheetos and a sippy cup with 2 ozs of his formula. It was a huge breakfast. Most of this is due in part to the fact that he's finally got his meds back on board. His GI meds help. A lot. So after breakfast he got his 4 morning meds and EVERYONE suited up to head outside and BOY. Did we have fun.
They hugged. They played. They threw snowballs. 


The laid in the snow and smiled. 

They were almost in snow up to their knees. It was glorious. 

Then we came in, had some hot chocolate, (warm formula for Blake) took a bath, had some lunch, B took 2 more meds, and everyone took a nap. 

It was normal. That's the important part. It all felt normal. If you remove the 10 meds that Blake had before 7:30, it was a normal day. But then after dinner it was time to clean. 

Blake's room had become a disaster area after a most recent shipment of Medical equipment, new organizational basket shopping, clean laundry. and a toy explosion. It had gotten out of hand and I decided that it might be best if David, Wes and Blake cleaned Wesley's room. 

Once I got the room cleaned, I saw it. The Great Divide. I try to ignore it on a daily basis. Some days I am successful at not seeing it, but today I saw it. And so here I am, blogging away so it doesn't eat at me tomorrow and the days afterwards. 

I could literally draw a line right down the middle of Blake's room. On one side there's toys and books and train tracks and a tricycle and stuffed animals. Everything a kid his age should have. 


And then there's the other side. The medical side. Once the room was clean and the toys had their place and the medical equipment had it's place, it was obvious. I ignore it when I can. Once I cleaned up, I couldn't ignore it anymore. It's an obvious, visual reminder of the fact that even on the good days, days like today, he is still compromised. We are still looking for answers. He is still sick and struggling on a daily basis to grow and thrive and be well. 

(IV pole with Feeding pump and hospital grade BP Machine, Pediatric Weight Scale, miniature IV pole, 3-drawer cabinet with formula bags, ferrel bags and med supplies)

(Nebulizer, glucometer and supplies, travel BP monitor, tube supplies and urine collection supplies)


After cleaning the room, I sure am glad that we had this moment. It makes The Great Divide seem smaller and smaller every time I look at it.


Monday, February 16, 2015

Here I am... again.

So here I am. Again. I have decided that it's about time I used the internet to post at the end of a long week, a long day, to put my feelings out there. Thinking and typing and allowing myself to really throw out my thoughts I'm sure will be quite therapeutic. If you want to read, please feel free. If you want to pass this along to another Mom who might be dealing with the same things, who needs encouragement, feel free. I hope you are reading this in good health. Stay tuned:)