Routines

Routines

Routine is the foundation upon which you can direct your family’s chaotic energy into a safe direction. Having an established routine allows your children to go through the necessary motions of their day without worrying about what’s next. Some of the common hurdles are inconsistent nap times and unexpected activities. Of course, these are all more pronounced when you have more than one child. Fortunately, there are tricks to handle even the most frustrating situations.

Quiet time is a great way to handle nap time, especially for your children who no longer take naps. Set aside a two-hour window and enforce quiet activities for all of your children. You get less noise, your napping child gets to rest, and your remaining children get time to do quiet activities like coloring or homework. All of your children may not agree, but everyone wins.

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Special Needs Link Party – Aug 4 ’16

Special Needs Link Party – Aug 4 ’16

Welcome to the Special Needs Link Party!  I’m so glad you could join us!

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Making Blood Draws Easier for Kids

Making Blood Draws Easier for Kids

No one likes having their blood drawn. Trying to explain to most children why someone absolutely must poke them with a needle isn’t realistic. It comes down to “no ouchies” which, frankly, is an argument I have a difficult time winning. With kids, you can’t exactly have a thorough discussion on the merits of whether or not these specific tests will provide adequate insight into their current medical problem.

I’m going to share what has worked for us. I hope it works for you. There’s no judgement if it doesn’t. Every kid is different! First, infants and toddlers under two. You really can’t do much for them except hold them down firmly with cuddles to minimize the stress and discomfort. Your focus will be more on the nurse. Ask yourself:

  1. Does the nurse have all of their supplies ready and accessible, while still having them outside of your child’s reach?
  2. Is the needle your nurse has pulled uncomplicated? It should look like a sewing needle, except it’ll be hollow.
  3. Are the test vials present? Sometimes nurses pull blood by syringe. That’s also fine as long as the syringe is ready to go.
  4. A second nurse will usually be present. While you hold your child down, the second nurse will either perform the blood draw or ensure the site they’re using stays completely still. I recommend highly to ask for a second nurse if there isn’t a plan for one to assist. It’s worth the wait.

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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.

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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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