For All Medical Personnel

Your best intentions maybe only making things worse.

These are my observations but I'm sure many will agree. And these are geared toward the care of children but I'm sure they apply to a lots of adults too.

Do you say "This isn't going to hurt" right before putting a needle in them? If you do STOP. It is a lie! And you know it! If you here a co-worker say that phrase please tell them to stop. Yes on occasion a needle stick may not hurt but that is what 1 in 1000? If you tell a child it doesn't hurt you have taught them to either not trust a nurse or not trust their own bodies. I'm not sure which is worse.

Have you ever said the phrase, "Oh it's not that bad." Excuse me? You don't know how this person feels. We all feel pain differently
and if the patient is scared it just makes everything worse. Compound that with a medical professional who doesn't seem to care (yes that phrase says you don't care) it's just an awful thing. This is far more important to those who can't communicate, especially children.

Please stop saying "All done" when you aren't. If you are dealing with a multi step process don't say "all done" until it is actually all done. Say something to the effect of "that is done" or "getting there." For a lot of people this may not be a big deal but it is HUGE for my child. "All done" means "all done." If you then go on to stick her with something else or put another probe on her she loses it. It will take a while for her to calm back down to a point where we can proceed. 

Do you smile? I know and understand that medical professionals are over worked and underpaid. That you work very long hours, are away from your family, take out MASSIVE student loans that take almost your entire life to pay back, and you deal with people at their worst all day long. But please, please, please take a moment to smile. It lets us as patients or family of patients know for that moment you are our doctor. You care about who we are and what we have to say. Even if you have 50 billion other things going through your head. For two minutes you are ours. That is what a smile says. 

Please do keep trying your best. I am very happy that we have had more good experiences than bad ones when it comes to doctors and nurses. So hopefully these observations can cut down on the bad experiences for others. As much as we all love doctors and nurses, sadly seeing them is usually not fun.

It All Must Go

Growing up Mormon big families are normal. I'm #4 of 5 and Trey is #5 of 6, and we both wanted 5 kids when we got married. We had planned to have kids about 2-3 years apart. Which meant we were going to save baby clothes, toys, and gear. As we gathered items for Squeaker over the years I would carefully store items in totes. Marked by size, and perfectly stacked in closets or under beds. Over the last couple years I've slowly been giving some away and selling some, because we had a lot! Especially when it comes to clothes. Since Squeaker has this thing against growing she often spend 2-3 seasons in the same size. Which means new clothes for each season. There is just so much stuff!!!! And as each problem comes up with Squeaker's health I feel further away from another child.

Two weeks ago I opened a closet to get some sewing stuff and saw the blankets that my grandmother made for my children. She made them when I was a teenager, long before her death. My grandmother made 5 blankets for each of my brothers and me. I had planned on giving one to each of my children. So I opened the closet and there were the blankets, staring me down and begging to be used. A wave of sadness came over me as I thought, I may never use them. About 10 minutes later I realized I could very easily give them to Squeaker for her children. The legacy would live on.

Then about three days ago I started going through clothes to sell for consignment. That was it I broke down and started to cry. I love Squeaker with all my heart and wouldn't change her one bit. I will also be very happy if she is my only child. It still hurts to come to grips with the idea that most likely my family will be much smaller than I had dreamed. Then there is all this baby stuff. Just sitting here mocking me. A toddler bed, toys, a bouncy seat, blankets, clothes, bottles, shoes, cloth diaper, baby gates, all these things just sitting there for who knows how long. So I decided that was it, "It all must go."

Sure there is still a chance we will have more kids. It's not completely out of the question. The
emotional stress this stuff is causing it just not worth keeping it. I would rather spend the money and replace it in a few years than be bogged down for years. With the consignment sale coming up I'll be able to get rid of some of the bigger items for cash. What doesn't sell or isn't worthy to sell will be donated.

I am keeping the heirloom and special items. The blankets friends have family have made, holiday outfits, special dresses, and anything frog :). It is all packed away nice and safe, and then of course anything we are using now or what Squeaker will grow into is nice and safe. The rest is sitting in a pile in the school room. This next week I will be going through everything, organizing for the sale and boxing up stuff for give away.

It has been extremely eye opening about the pain mother must go through when having troubles conceiving or adopting. I just caught of glimpse of it and I was miserable. I also am blessed that I can physically liberate myself from that anguish. I'm sure I'll still have emotional days about it but this will most certainly help. And I have to say I love having almost two whole closets emptied.

Infusion Fail

  In December the day after treatment Squeaker was grumpy, groggy and had terrible stomach pains. We called the Immunologist's office and let them know. These were not good symptoms for Squeaker to be having. It meant she was having a delayed reaction to the infusion. The nurse talked to the doctor and decided to change the infusion protocol and see how Squeaker did.
    A week and a half later Squeaker was on steroids and antibiotics for a cold, sinus thing. It wasn't fun but it was nice to have the extra protection while we traveled to see family for Christmas. Squeaker did great with all the travel, and managed to not pick any other bugs up.
   January 7th we had our second infusion, using the new protocol. It went really well, not nearly as rough on Squeaker. A little longer but she was happy the whole day, except for the part where they had to stick her twice. But otherwise infusion was just fine.
   January 8th turned out to be awful. The grumpy and groggy came back, which on it's own is pretty normal, but then it hit. The vomiting, just as Squeaker was passing out to sleep. Up came everything she ate that day. And I mean EVERYTHING!! Undigested chunks of mac&cheese, fries, chicken, bread, mucus, orange juice, just *shiver* everything. I have no idea where she stored that much inside her little body. But by seeing that things were undigested meant that Squeakers stomach was paralyzed. Paralyzed stomach is one of the worst things we have to deal with. It can last anywhere from 12 hrs to 7 days was our longest. When it happens you have to watch everything she eats. Foods have to be simple and easy to digest. Lots and lots of fluids and you have to be careful how much she eats, even if she is starving. The only way to know that it has passed is to feed Squeaker something heavy and pray it doesn't come back up. Squeaker never threw up again but the pre-vomit cough was still heard for three days after.

   Of course I called the nurse about this. She talked to the doctor and instantly it was decided that we were no longer going to be infusion therapy. We will be trying SubQ next month. SubQ is short for Subcutaneous Therapy. It is where instead of using and IV to administer the medicine it will be injected just under the skin so slowly dissolve and be absorbed into the system. 

Upsides To Sub Q
Doses are smaller. There are less reactions to SubQ especially in patients like Squeaker that doesn't tolerate the IVIG well.
More balance protection. The ups and downs of SubQ are almost nonexistent.
It's done at home. No more traveling to Birmingham at 6am.

Downsides to SubQ
It's done at home. A nurse will come out to teach us how to give Squeaker her shots. Oh fun! NOT!
More balance protection. It's more balance because it's more often, we are going from monthly to a weekly treatment. Blech.
Doses are smaller. Well maybe this isn't really a bad thing. It just makes me feel like if I screw up I've really screwed it up.

Boy the things parents do for their children.

Upcycled Windbreaker

For most woman if you buy them expensive jewelry or clothes you win their hearts. Well for me that doesn't work. Most clothes cause me pain and I'm allergic to most metals so jewelry is a no go. Trey knows the true way to my heart, a tool or gadget of some kind this Christmas it was a new sewing machine! I've had a sewing machine for the last few years and it most certainly has been a blessing but just look at that picture. If you sew who wouldn't want a full computerized machine? And yes I'm a Project Runway fan to that just makes it even cooler.

Then for our 6th anniversary Trey watch Squeaker all day, cleaned

house and cooked all the meals so I could lock myself in the sewing room with a big project. I was making a new messenger bag for Infusion days. A bag to hold the laptop, a pocket for the tablet, space for a couple of water bottles, a few snacks, diapers, and a couple of small books. Our diaper bag is close to holding everything but the laptop. The new bag is just a little bigger and with pockets for the electronics.

Now money is tight right now, so I wasn't able to buy any fabric. It all had to come from my stores, which is mostly flannel. Then I found my old middle school color blocked windbreaker. (Sorry no before picture) I have been meaning to take it apart and use it in a quilt. I did a few measurements and realized I could use it for the bag. Which would give the bag great color and the windbreaker was nylon what an awesome fabric for a traveling.  Dug a little further in my tote and I found some good fabric for the lining. Don't ask me what it's made of, it was a remnant I picked up somewhere along the way.

After carefully seam ripping the jacket to pieces I cut it up according to my pattern. Then cut and

sewed the lining. Then I sewed the bag. Attached the two parts and Ta Da! The strap will probably get shortened but overall I'm in love.

Final measurements are about 17 inches wide not including side pockets. 3 inches deep and 12 inches tall.

The tablet pockets are the jacket pockets just put in the bag.
The side pockets were cut 8x10 rectangles (I think) and the elastic on the pockets is the elastic cuffs from the sleeves.