Our Medicine Chart & GI Visit

Here’s a copy of the medicine chart we have posted in the kitchen to help us keep track of all the kids’ medicine.  (It shifted a little when I pasted it, but you get the general idea.)

			Monday	Tuesday	Wednesday	Thursday	Friday	Saturday	Sunday
Morning (7:00)	Silas	Polyethylene Glycol
		powder, 1/2 dose in water cup
		Balsalazide Disodium
		1 tablet, yellow, use syringe
	Autumn	Polyethylene Glycol
		Powder, 1/2 dose in water cup
		Threelac
		Powder, 1/2 packet in water cup
		Leukovorin
		1/2 tablet, swallows whole
		CoQ10
		2 chewables
		Vitamin
		1 chewable
Lunch (11:00)	Autumn	CoQ10
		2 chewables
After Nap (3:00)	Silas	Polyethylene Glycol
		powder, 1/2 dose in water cup
	Autumn	CoQ10
		2 chewables
Night (7:00)	Silas	Balsalazide Disodium
		1 tablet, yellow, use syringe
		Singulair
		1/2 tablet, swallows whole
	Autumn	CoQ10
		2 chewables

Also, Silas saw his GI here in town yesterday to get some documents for the school to assemble a Health Plan.  I found out that Silas had a low prealbumin level of 13 (indicating malnutrition) in December of 2009 that no one ever told me about.  He was pretty sick at the time, so they dismissed it and never went back to recheck it.  It was one of the things that was low on the blood work from Dr. M in South Carolina.  So, it’s very possible that he’s been malnourished for several years now.  L  The doctor also took some blood to an IBD Diagnostic Panel.

I ordered an adult multivitamin for Silas to try, and we’ll just have to see if it triggers problems in his digestive system.  I’ve also ordered a can of Elecare to see if I can coax him into drinking it.  He was on Elecare several years ago, and it’s the only thing he’s been on that doesn’t cause him any problems.  We quit it at the time because he refused to drink it any more.  (It’s pretty nasty – the smell alone will make you a little queasy.)

He’s finally recovering from the Neocate Splash trial.  For that, I am thankful.

Janel

Blessings #1-29

1.   My favorite cookies

2.   Goodbye kisses

3.   A night without kids

4.   Help around the house

5.   Sitting on the couch with my hubby

6.   A day to myself

7.   Lingering under a warm shower

8.   Expectations for the future

9.   Footie socks, warm and soft on my feet

10.        A friend’s sale of a former home and preparations of a new one

11.        Timely replacements in the mail

12.        An almost first grader learning to read

13.        Excited tales of adventures with Nana

14.        Sparkling, mischievous eyes

15.        Peek-a-boos from behind the door

16.        An ear that heals without a doctor visit

17.        Happy dances over a lost toy, now found

18.        Giggles & smiles

19.        Coloring kitty cats and lions with  Autumn

20.        Joy over a new food (Silas’ noodles)

21.        “Mom, you make the BEST chicken fingers.”

22.        An unexpected rainbow across the piano

23.        Painting with food coloring

24.        A five-year-old learning to swallow medicine tablets

25.        The return of “The Happy Voice”

26.        Peace between siblings

27.        A growing boy not yet too big to snuggle with his Mom on the couch

28.        Goodnight hugs

29.        God’s daily provisions – I Kings 17:14, “The bin of flour shall not be used up, nor shall the jar of oil run dry, until the day the LORD sends rain on the earth.”

Janel

My Article

I’ve scanned the article I wrote, and I’m going to try to post it.  (If you missed the explanation, look a couple posts back to “I’m Published!”)  ABCH generally does not mention their foster children by name in their publications, so none of our names are used.

I believe you can click on each picture, and it will bring it full screen so it’s easier to read.  If not, grab a magnifying glass, and we’ll hope for the best.

Janel

Taken from LifePrints, July & August 2011.

Labs

We’ve heard back about some of Silas’ labs from when we went to SC, and Autumn recently had a follow-up with the immunologist.

I’ve mentioned the wide range of responses that I get from doctors regarding Silas’ health.  Some see that he’s gaining weight and seem unconcerned that he’s not getting an adequate diet.  Others act like I’m a horrible mother because I’m not adding in a multivitamin – even though every one we’ve tried so far has made him scream in pain.

Dr. M’s nurse called and said that Silas’ prealbumin levels are off, which means he is starting to show signs of malnutrition – even though he is gaining weight.  His BUN was also off.  They said he is most likely not getting enough fluids.  This is the second time a test has indicated that.  What is puzzling is that all he drinks is water, and he already drinks about 30 oz. a day.  I’m not sure what that means at this point, but I’m supposed to try to increase his water intake.

I’m not sure how to correct the malnourishment when he cannot tolerate sugars – even the good ones in fruits and vegetables.  Dr. M had given us some Neocate Splash to try, but it didn’t go well.  Silas still hasn’t completely recovered from that yet.  Dr. M’s dietician is very nice, and talked with me over the phone for about 30 minutes, trying to figure out some type of supplement he could take.  Since he’s able to swallow small pills, we’re looking into breaking adult pills into smaller pieces.  Adult pills generally do not have the sugars that are added into all of the children’s supplements.  We can only hope this will work.

Autumn recently had her follow-up with the immunologist (Dr. I).  It was during our last visit with Dr. I that she fainted, hit her head, and had a seizure.  (See this post for the details.)  He took more blood before we left.  He wants to see how her body processes vaccines.  He is also redoing her ANA Test (which was positive last time) as well as adding tests for antigen stimulation and NK function.  He can’t say exactly what the positive ANA Tests means, but it could be an indication that something else is going on.

I warned the nurse that Autumn is prone to vasovagal reactions, so they had Autumn lay down on the table (instead of having her sit up in my lap) to take her blood.  What is so ironic is how much Autumn talks while they are taking her blood.  For most doctor visits, she will not speak to anyone, but when they go to stick a needle in her arm, she talks non-stop.  In the past, it’s been a somewhat of a normal (quiet) voice.  Not this time.  She protested loudly the entire time.  I felt very sorry for everyone in the waiting room.  Some of their children had not yet realized they were about to be poked until they heard Autumn’s cries for help.

Here are some of the things you would have heard if you were in the waiting room that day:

“No!”

“Are you done yet?”

“AHHHHHH!”

“You’re hurting me!”

“Done.”

“AHHHHHH!”

“I want my daddy.”

“Done.  Done now.”

And when I tried to assure her that she was going to be fine.

“No, I’m not going to be okay.”

“AHHHHHH!”

Although there was no throwing up or seizures this time around, there were several moments when she lost consciousness for just a few seconds.  She would be in a middle of a scream, suddenly close her eyes and go to radio silence and then, just as quickly, open her eyes and resume screaming. 

She was very pale by the time they were done.  I made sure she got up very slowly and sat with her a few minutes before we left to make sure we didn’t have any of the complications we had last time.  As I carried her out of the lab room, everyone in the crowded waiting area just stared, trying to figure out if we were the ones responsible for all of the loud, torturous screams.

I just smiled, held my head high, and carried her to the van.  At least we made it out of there without puke all over our clothes or another seizure.

Janel

I'm Published!

After Autumn finished her time in TheraPlay, her counselor asked if I would write about our experience.  ABCH produces Life Prints, a small bimonthly magazine.  There was a possibility that they might use my article in a future issue.

I received the newest Life Prints in the mail a couple days ago, and I was thrilled to see that they had used the piece I’d written.  Yeah!!!  (Of course, there was a little editing.)  They have posted some of the older issues to their website, but last two are not there yet.  I’m hoping they will get caught up soon, and I can give you a direct link to the article.  You can click here to see past issues.

I was so excited!  Also, Autumn’s counselor sent me an email yesterday.  Here’s some of what she said:

Your article has been a HUGE success!  I have gotten several comments from several foster parents about how your story helps them to have hope.  I am even using it with NON ABCH parents in theraplay when they are losing hope. 

They titled the article “Our Daughter, His Love,” and it’s in the July & August 2011 publication.

Janel

Happy Fourth!

Silas was excited from the moment the first firework trailers started to show up.  Of course, it was a while before they actually opened, but the unmanned trailers were just enough to make him overjoyed with anticipation.  After Criss got off work last Friday, we took the kids for a special fireworks shopping trip.  We didn’t get that many things, but it was enough to make the kids happy.  We used a few that night and saved the rest for The Fourth!

While at the fireworks stand, we specifically tried to buy things that were pretty but didn’t make a lot of noise.  Autumn is still very sensitive to loud noises, and fireworks usually bring her to tears.  L  The first experience I recall was several years back when we decided to watch the large fireworks display that is launched near Vulcan every year.  We were many miles from the actual site of detonation, but Autumn was absolutely terrified and tearfully made it through with Criss covering her ears for her.  So, if we’re outside somewhere, she cries and holds here ears until it’s over, or if we’re at someone’s house, she runs inside once the exploding begins.

This year, however, I think we’ve come up with a system that works for everyone.  We specifically bought items that with a little less “bang.”  I told Autumn that we had bought things that would be pretty but wouldn’t make a lot of noise.  She was not going to be convinced that easily.  I tried to sit with her on the porch while Criss and Silas headed up the festivities in the yard, but she wouldn’t have it.  Since her room is on the front side of the house, she ended up going inside and watching from her bedroom window.  That way, she was able to watch but felt a bit more secure with a barrier between her and the explosions.  So, that was our general setup for our Friday night pre-show.

The weekend was busy with a birthday party (at the movie theatre where the kids watched Cars 2), a Sunday School social, church, a Daddy/Daughter date at the Botanical Gardens, etc…

Monday (July 4^th) we went swimming and ate lunch with some of our family and friends just before storms set in for the afternoon.  That night we finished our fireworks show in a drizzling rain (probably for the best since there have been so many fires lately).  Criss and Silas stood in the yard with umbrellas while I sat on the porch and Autumn watched happily from the window.

So thankful to live in America!

Janel