I didn’t want to post this on April Fool’s Day…

Yesterday Miss Munchkin stood from a therapy bench on her own and held her balance (old news) but THEN she took a STEP with her left foot! No help, no one holding, just the crowd going crazy!!!!! (It was a fun a day with a bunch of the cool moms so it turns into a cheering section for all the kids!)

She’s having trouble with her right foot but she’s trying! She did the step with her left food several times (because it is therapy and you have to do reps!) so I know it’s for real!

And even better, it doesn’t look like she’ll need braces or anything. We might go for soft ankle braces so she doesn’t break a cute toe once she really starts going (she tends to roll outward while walking) but she doesn’t NEED them to walk! WOOHOO! And no compression suit. She’s getting to be made of steel in her belly. Oh, and they said to wait on the walker too!

And if that wasn’t enough, no seizures since Monday!

Now I’m praying that it continues…

“Thank you Lord, I needed this encouragement!”

Yesterday, I said:

Sometimes I feel like all I do is get her food and drink and clean diapers and then clean up from the above.

Three of the side effects of ACTH is increased appetite, increased thirst and weight gain. So far all of that has been true for Miss Munchkin:

She’s eating three big (for a two year old) meals a day plus two decent size snacks. For comparison, she used to eat two larger than average toddler meals, two good snacks and one small snack.

She’s drinking 3-4 ounces of water every 1-2 hours a day and has gotten up every 1-2 hours the last two nights for 3-4 ounces of water and then goes back to sleep. So in the last 24 hours she’s drunk about 48 ounces of liquids!!!! She used to average about 20-24 ounces.

On Monday (13 days into treatment) she’d gained three pounds… gone from 24 pounds to 26 pounds, 14 ounces. Most of it is water retention caused by the ACTH, but some is probably increased caloric intake, even if she hardly stops moving while awake.

So what does all this mean for Mommy?

I have to plan three meals a day for us, which is not all bad since I need to be eating balanced meals as a pregnant mama. There’s something about having to plan an official lunch every day that’s really throwing me for a loop. (She used to nap from 11-3 so she’d have breakfast, a mid-morning snack, a large afternoon snack, supper, then an evening snack.)

I’m the drink re-filler. I’ve finally gotten smart and started re-filling the cup as soon as it empties so it’s ready for the next time. (This is an especially good idea at midnight!)

I’m changing diapers every 90 minutes during the day. I’m not one of those crazies who thinks you have to change the diaper every time they wet, but I don’t like sopping. So really nothing has changed except for now I *have* to change every 60-90 minutes or else she’s completely soaked through the diaper and drenched her clothes and whatever she was sitting/laying/playing on.

I have to change diapers during the night! I have *never* had to do that with this child in her 21-1/2 months of life even while nursing through the night! Last night when I put her to bed at about 9:30 (we had to pick Hubby up from the airport) she was in a toddler GMD prefold with a night stay dry doubler and a prorap cover. She was soaking through the cover by 2am (after cups of water at bedtime and 11 and 12:30) so I put her in a two GMD brown edges stacked on top of each other with a microfiber insert (from a fuzzi bunz) between the brown edges and the prorap. She was pretty sopping when she got up at 6:30 (no water breaks between 2am and 6:30… yeah for sleep) but fortunately her sleeper was still dry both times!

(For those who think I should do sposie dipe… tried that. She’s through that in even less time!)

I’m changing her outfits several times a day and sometimes at night. She’s just soaking right through them!

I am running at least two laundry loads per day, one of diapers and another of clothes. (I usually do diapers every other day and clothes once a week, with a load of whites and a load of colors on Fridays.)

I am sooooo thankful for my potty pail. Miralax is helping with the constipation side effects but I cannot imagine having to dunk those dipes. Blech. Related to that, I have decided that I need more cloth wipes. I think some of the 24 have disappeared…

So yeah, it’s been interesting.

We have been doing the injections for 15 days. It’s continuing to go well, although her blood pressure is up. This is to be expected and we just keep an eye on it at the weekly doctor’s appointments. It was good to see it down just a smidgen this week from last week. She has gained three pounds in two weeks, although most of it is likely water weight. She’s definitely got a larger appetite and is drinking more water. Sometimes I feel like all I do is get her food and drink and clean diapers and then clean up from the above.

The original plan was for us to start tapering the dose today, but when I spoke with her neurologist yesterday it was decided to continue on the higher dose for another week. This decision was made because she is still having one spasm a day. (She was having an average of a dozen visible seizures a day and just generally “out of it.”) It is our hope and prayer that another week will allow us to get rid of this last spasm.

In terms of how we’re all doing, I must say I’m excited with how much better this round of injections has gone. By this stage in the game last time, we were not sleeping at all and that was really hard on all of us. This time she’s taking a nap each day and sleeping fairly well at night. It’s not as much sleep as she’s accustomed to, nor is it as neatly scheduled as it was that first week, but it’s better than it could be and we’re very thankful!

Thank you for your continued prayers. Some specific things to pray for:

1. That the medicine would continue to work well and that we will see the spasms go away completely… and for good this time!

2. That she would continue to get as much rest as possible.

3. That we would have patience. (Constant squawkarina can be really grating!)

4. That her blood pressure and weight would remain in control so we can finish the treatments.

5. That the refill the doctor ordered will come in quickly. (With the lengthened treatment we will run out next week and it takes about a week for the meds to get in if all goes well.)

6. That my body would continue to carry our new little blessing well. I’m due in 6-1/2 weeks!

3 shots down, 37 to go. She’s not thrilled with the whole process, but she’s taking it like a trooper.

In happier news, I think I have figured out this med’s cycle!

(One thing I’ve learned from my daughters being on close to two dozen meds between the two of them is that every medicine has a cycle. They either get wired, then sleepy or they get sleepy than wired… or some variation of the same. Oh, and some make them seriously cranky for portions of the cycle as well! Whenever another parent or doctor tells me the side effects are horrible, I tell them to make a journal of what happens and see if they see a pattern. Sometimes it’s as simple as giving a dose a few hours earlier than you have been and you’ll find you can deal with them a lot easier. For example, if you know they will cry for three hours, make that be first thing in the morning and the first part of the night so you can be in the best frame of mind to deal with it, etc.)

Sooo… after I got over my shock about having to do these injections again, I decided that I was going to write down everything this child did and I was going to figure out the pattern if it killed me. (Since not knowing the pattern would kill me anyway, lol.)

Take a look:

Wednesday
8:15am — first dose of medicine
(pretty loopy, then wired, then out of it by turn…)
11:30am — asleep for several minutes already… I was surprised and “dream gave” her regular meds
3:30 — awake, small bit of snack (pretty close to a regular length nap time for her)
6:35 — second dose of medicine
(same response as morning dose)
9:15 — gave regular meds
9:35 — out for the night… not a peep all night

Thursday
7:45 — her little head popped up when I checked on her since she was sleeping a bit later than normal. could have sworn she said “up.”  Wishful thinking? Probably.
8:06 — second dose of medicine (Can you tell I decided to get exact to test my theory?), breakfast
(same med response as yesterday)
10:30 — other meds
11:06 — out like a light again… on the living room floor at that and hardly a stir when I put her to bed.

If this pattern holds, this is INSANE. I’m not a scheduler by nature, but darn it, if it works, then I’m all for it. I will be dogmatic about when that shot is given!

Oh, and did I mention that those infant gas drops are my best friend?! We didn’t get told to try them until we were two weeks into the drama last time, but when we did, it made a world of difference. So I started them up front yesterday… I forgot a dose last night and there was that crazy upset cry again. Gave them to her and she calmed down a bit. So yeah for simethecone.

I’ll keep you posted… Thanks for your prayers!

The pharmacy just called saying they have the ACTH. We’re going to pick it up as soon as traffic dies down this evening.

Please pray:
1. they have the correct medicine and syringes
2. the dosing info is on the vial is correct (last time they have it to us by body surface area so they had to have the pharmicist re-write it to show cc/ML)

If everything is in order, we will commence tomorrow morning.

Munchkin had an EEG from Monday morning to Tuesday morning this week. The neurologist just called me with the results. The results showed severe infantile spasms. She is ordering ACTH injections. We had this last year and it did help, but it really wore on our whole family. Munchkin didn’t sleep longer than an hour for most of the month of treatment.

Please pray:

1. That the insurance approve this QUICKLY. This is a 6 week (minimum) course of treatment and Mr. Bean is due in 9-1/2 weeks.

2. That this WORKS.. for good this time.

3. My attitude… I really don’t want to go through this again, especially while in my third trimester.

What good is a basket of toys to a Bamberina? Not much appearently…

It’s finally happened! My girlie is playing with something besides her toes of her own free will!

But, does she play with one of the many colorful, age appropriate toys that I have procured for (physical and occupational) therapy? You know, the ones that we “practice playing with” several times a day?

Oh NO. Of course not. Why would we do that?!

Nope, she found a 12 inch long register receipt on the floor. (The one I was reading my transaction number off of for the sears survey online… why do they give you that huge receipt for one pair of shoes?) She picked it up, crinkled it, put it on the floor and slid it around, then kicked it around with her foot… All while carefully watching to see what it did and smirking at the lovely crinkle sound it made!

ROTFLOL.

And it’s not just a thing from today. A couple of days ago it was the roll of packing tape that I was using to close up her Grandma’s birthday package.

(Now she’s laying on one of the couch pillows and sticking her bum in the air.)

All of this, right in front of the toy basket.

And no, I’m not complaining. I love seeing her play around on her own and finding things to amuse herself with. I just think it’s funny that it’s the silly items around instead of what the pictures on the toy packages promise…

Laugh with me.