Update – More Testing Needed

We went to the hematologist yesterday. They need to run more testing. According to the tests ran two weeks ago, our son does clot moderately slower than expected. They’re not sure why and the additional tests will hopefully provide some insight. Depending on the cause it may be easy to manage. I didn’t ask questions about what we’d need to do if it wasn’t easy. I don’t want to know unless I need to know.

It’s been tough for me because I wanted to believe I was wrong. I wanted with all my heart to believe I was paranoid and I had been nagging nurses to hold the gauze a little longer and check before they put the bandaid on after removing an IV for no reason. I wasn’t wrong. I’ve known for a long time he had this issue and while I chided the nurses to be cautious, I still denied to myself that there was a real problem.

I keep telling myself, “it’s good to know.” Realistically, my heart is hurting. My baby already has Noonan’s Syndrome which was difficult to diagnose because it was a mutation and not inherited. I don’t want another diagnosis. I want to focus on helping him have as normal a life as possible considering the obstacles he’s already facing.

Update – A Rough Fall

No word yet from the doctor about the lab results which, frankly, is probably a good thing. About a week from now we’ll go back for an office visit and get the official word. If they haven’t called yet for additional testing they probably won’t. It’s still possible I might get a call but most likely there are no bleeding issues and the appointment will be straight forward. It’s definitely a relief not to have heard back with bad news even if there’s a small chance the call might still come.

The wound is healing. The kaleidoscope of colors has faded for the most part. Now he has a golf ball sized lump. While it looks bad, it’s almost reduced to the point you might expect it to happen from a random bump on the head. I’m looking forward to it going away entirely. With every bump and scrape, you get a funny look now and again from strangers. This particular injury has resulted in way too many uncomfortable encounters for my tastes.

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Crazy Week – A Rough Fall

Crazy Week – A Rough Fall

Not sure how many people know this. I certainly had no idea before this past week. Noonan’s Syndrome carries a decently high probability of having a bleeding disorder of some kind or another. Having a bleeding disorder can mean a lot of different things. Sometimes the bleeding is slow to stop. Sometimes the wound re-opens easily for multiple different reasons. I didn’t know any of this until our son took a spill face first onto the hardwood floor from standing height. He falls a lot but this one was different. A blood vessel in his head burst on contact.

Instantly he had a golf ball sized lump on his head. I wasn’t sure how serious that was so I was dialing the pediatrician when it gradually doubled in size before my eyes. Suddenly, I didn’t feel so comfortable waiting on hold. I called our emergency number and waited for the medics to arrive. When they came in the lump was about 90% of the size it would eventually become. They advised I take him in as a precaution so we grabbed my purse, both of our shoes, and loaded him into the ambulance.

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Special Needs Link Party – Jul 7 ’16

Special Needs Link Party – Jul 7 ’16

Welcome to the Special Needs Link Party!  I’m so glad you could join us! It’s going to be the first Thursday every month from now on at 10 am Central. The link-up will stay open until the following month’s post.

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Be Careful with Your Fireworks

Be Careful with Your Fireworks

Besides the typical, “don’t blow your hand up,” advice there’s something else you might not have considered. Please be understanding with people who have combat PTSD, autism, sensory processing disorder (SPD), and other related conditions. How? The best way is to set your fireworks off in an area that’s not residential. If that’s not possible and someone asks you to stop setting them off, please stop.

What’s the big deal? It’s a little different for each condition. Combat PTSD triggers memories of the battlefield. The explosions and screaming, even if they’re because the people involved are having fun, are enough to trigger the memories of combat to overtake a veteran. Once the memories become active the person is no longer in the present and may not be able to come out and ask nicely for you to please set them off somewhere else. Not all veterans have PTSD but it would be most kind this Monday to assume they do unless told otherwise.

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Learning from the UK Referrendum

Learning from the UK Referrendum

It sounds so far away and irrelevant when you’re battling day-to-day with medical providers, medication schedules, feeding schedules, and more. What could we possibly learn from the UK referendum? Well, now that millions of people have signed a petition for a chance to vote again – this time for serious, a lot.

The two biggest complaints seem to be first, they voted in protest and not because they actually wanted to leave. Second, they would have voted differently if they understood the immediate repercussions resulting from their choice. Re-worded differently, they voted that way because of emotional reasons or because they didn’t fully understand the consequences of their actions.

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Special Needs Link Party – Jun 23 ’16

Update: It looks like we’ll be doing one of these per month. It’ll still be at 10am Central on Thursday, probably the first Thursday of the month. Feel free to read for information about the link-up. Link submission has been closed.

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A Change of Approach

The vision of this site has always been to help parents of special needs or medically complex children thrive. The devil is in the details, as they say. This came down to three main pillars.

  1. Provide important and timely information
  2. Share our struggles and progress, good news and bad
  3. Help parents find products that can make their lives easier

The first two are primarily driven by writing and they’ve been going well based on reader feedback. The third has been significantly more difficult. Setting up a retail store was not as easy and straightforward as it sounded. I made the attempt but getting a wide range of products and offering them at competitive prices while also taking care of our son wasn’t practical.

My most recent attempt to satisfy this last piece of my vision for the site was to partner with Amazon. I’m happy to report it seems to be working well and I hope it continues to work well into the future. There are a wide variety of products, I don’t need to stock the items, and Amazon handles the shipping. That said, it’s still our store. We choose what to list in the store. The products in the store have been recommended by other parents who have used them or we have used them ourselves with positive results.

If you’d like to recommend a product there’s a page for that.

If you’d like to take a look at the products in our store there’s a page for that too!

If you have any feedback please feel free to share it with us. We feel that to meet our overall vision we must be successful in all three pillars.

You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

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#OrlandoUnited

Donations can be made at this GoFundMe page. It’s been vetted by NBC Miami and is being managed by Equality Florida.

Local hospitals are in need of blood donations. This is a list of local blood donation centers. Despite rumors to the contrary gay men may not donate blood unless they’ve been free of sexual contact with another man for a year or more.

Attacks like this are perpetrated to instill fear. If you see something suspicious, please report it immediately to local police. While it’s legal to have guns in many places, it’s more than reasonable to question anyone openly carrying a firearm in a place where shooting it would not be appropriate. Keep in mind some may carry today for self-defense.

Hatred and violence against any group of people is NOT OK. Anyone viewed as different from mainstream society is at risk of being targetted. Regardless of whether the attack is perpetrated because of Race, Color, Religion, National Origin, Age (40+), Sex, Pregnancy, Citizenship, Familial Status, Disability Status, Veteran Status, Genetic information, or ANY OTHER REASON, it’s just as horrible.

The special needs and medically complex community stands with Orlando. We’re sending prayers and positive thoughts your way.

Statement from Pulse

Like everyone in the country, I am devastated about the horrific events that have taken place today. Pulse, and the men and women who work there, have been my family for nearly 15 years. From the beginning, Pulse has served as a place of love and acceptance for the LGBTQ community. I want to express my profound sadness and condolences to all who have lost loved ones. Please know that my grief and heart are with you.
Barbara Poma, Owner

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