Hard Day's Night

I just want to say that sometimes I want to fake my own death. If that's what it takes to sleep without Jack kicking me, or getting up to be Emma's chambermaid. Of course the game would be up pretty quick because I'd run straight to Gram's house and you know she can't keep a secret!

House Plans

mmmm...extra-spicy crunchy gingersnaps in the brown paper bag. So good with milk. As an added bonus, Emma doesn't like them.




Scott, the architect, dropped off some plans yesterday. We need to start thinking about electrical placement, plumbing, etc. I drew an elevation of the front of the house that has us trying to decide on color and materials. We live in a colorful neighborhood, but stucco is the norm, and the least expensive choice. I think we have ruled out all the greens, blues, purples, and reds. You may find it funny that those were even on the table, but there are several examples of all of those in our neighborhood! We don't have huge expanses of stucco, so we do want a color with some pop. The big problem is finding a trim material/color that goes with the remaining choices. A long brick that looks like old adobe bricks is a good choice for the wall. There are many other styles of brick, too. Stone or stone-face would look cool and arts-and-crafts-y, but not really appropriate since those rocks aren't found here. Part of the success of arts-and-crafts style, is that as it spread around the country, a builder was supposed to use local materials to tie the design to the surrounding landscape. Craftsmanship and appropriate material choice were key principles, and, in keeping with that, we don't want to use vinyl window frames or cladding around the pillars. Many of my favorite bungalow house examples have white painted wood trim. Unless there is a white paint that has been developed to withstand the heat and dryness, and to protect the wood, it's probably not an option. But, maybe there is such a product. Alternatively, some woods do great with an occasional coat of Thompson's, and we could leave it a natural brown. Does that go with our field color choices? Of which we are left with yellows and oranges. You have to get just the right shade. I have seen a couple of yellows in the neighborhood that I like. A dark sweet potato color is popular here, and I like it on the southwest style, but maybe not for our own house. There's a big difference between liking it when you happen to see it, and liking it on your own house day in and day out.

Sabril

Just a quick note to say that we have started Jack on the Sabril. We haven't seen the spasms come back yet. I am skeptical as this is a fairly low dose and resolving the brain patterns is the real goal. Will this dose go deep enough? A fair trial is about a month. Then an EEG will show improvement or not. Also, we finished the ACTH around the same time we started Sabril, so how long does it take for the effect of the ACTH to wear off? In the meantime, Jack is happy and active. Right now he is babbling and kicking in his chair.
Still having to check the blood pressure and medicate for that. What a nightmare the BP has been! On Friday, after being told we'd need to come in every day for the next week (Ha!), I decided to try an experiment. Various nurses and doctors told me that the $30 BP monitors at CVS wouldn't be compatible with a child cuff. On Friday I bought one, switched the manual sphygnomometer out with the automatic fitting, and voila! It worked like a freakin' dream. I was so mad about all I had gone through for blood pressure. Fire station every other night, false high readings, hours in the ER, neighbors coming over, hours on the phone fighting for home health...WHY DON'T THEY KNOW ABOUT THIS?! The nurse said that automatics are calibrated to go to a certain pressure. Which is right. But it's reading the air pressure, like blowing up two different size balloons. The child cuff's bladder has a smaller volume, tricking the machine. That's how it works on the professional ones with interchangeable cuffs, so why wouldn't this work, as long as the connections are tight? Anyway, I'm no genius, they just haven't thought of it because they aren't the ones schlepping kids to the doctor daily. In fact, today, I'm going in to prove that it works, so they'll "let" me use it.
Then I'm going to meet Harmony for lunch, if she can. And shop at Lil' Traders for cute fall clothes for the kiddos. The weather has finally turned here, and it's wonderful. I made hot chocolate the last two nights and changed our sheets to flannel. I looove flannel sheets. The roses are blooming great in the cooler temps and the ash tree will turn soon. This is my favorite time of year. Especially because I love Halloween. I have my little witch and my skeleton to take around this year. Emma is big into pumpkins. She has them confused with "Thumbkin", you know, "Where is thumbkin, where is thumbkin? Here I am, here I am..." We sing that every night and she's getting pretty good at it!

And another thing...

Now that Emma is at music class I can write a little more. When I went to the hospital on Friday Jack gave me a big smile. Then when I was bouncing him on the bed, he laughed his funny laugh, like a little squeak! And that's after only one day of the decreased dose! I'm so glad to be done with the steroids. Next we'll try Sabril. If that doesn't work we'll try Prednisone. If that doesn't work, we'll put him on the ketogenic diet. I think Emma will get her fun momma back and I can stop being a martyr for my children. I am hopeful that I will get back to my "Couch to 5K" program this next week. Before I got pregnant with Jack, I got up to week 3. Then my energy level dropped and I lost the motivation to exercise. A few months after he was born, I got up to week 6. I may not have to start all over this time and I'll definitely reach the 5K mark at week 9 and keep it up after that. It will be nice to have 30 minutes to myself in addition to the endorphin high from exercising. Let me go put Jack down for a nap, he's falling asleep here. Just know that we are doing better and feeling hopeful.

Turn-Around

Wow! I really wear my heart on my sleeve, don't I? Attitude and sleep are inter-dependent and more important than the actual situation sometimes. Truth is, even when I wrote that post, Jack was turning around. His blood pressure was coming down and we had decided to taper off the steroids. We have three possible treatment options to consider now, instead of the one we thought we had. Friday afternoon Jack was sent home. That happened to be the day I have a house-cleaning agency come (once-a-month, ain't it grand?!). We ordered a pizza and called it a day. Now it's Saturday and I have slept, Nick is home and in charge. I feel like we can move on with our lives. Today I will attempt TJ Maxx and Costco. We'll get out the Halloween decorations tomorrow (nothing elaborate) and have a little cake and coffee with the fam for Nick's birthday (October 12). I also want to make granola and a big batch of soup. So, back to life...back to reality! Remember that song?

Much love your way.

Been Awhile!

We're in the middle of another hospital stay for Jack. Tonight Nick is there and I am home with Emma, so I can take time to post the latest. After almost 8 weeks of the steroids, three of which were weaning and absolute hell on all of us, we were through with it. Then the most beautiful thing happened. Jack came back...what a smile! He even laughed a little. He started to lift his head and get some tummy-time exercise. We were making progress every day until the spasms came back. We'd had a great six weeks. We had known that they could come back. Maybe it returned because the steroids weren't at a high enough dose for long enough. Maybe it would always have come back. So we started all over again on the steroids about a week and a half ago. Besides two shots, it means going from 2 oral meds to 4, twice a day. He gains weight, but loses muscle control. My cranky 20# sack of potatoes has to be lugged from room to room. I'm so exhausted by the end of the day, a shower seems like too much effort. The saddest part is that I usually don't have free hands to play with Emma, and I'm just no fun anyway. But enough about me, Jack's blood pressure shot way up yesterday, and we headed off to the hospital. Admitted to PICU! That'll make you feel special! They've been trying to bring it down and it is very slowly coming down. Along with Jack's doctors, we have decided that we just can't risk doing the steroids again. Plus, if the spasms are going to come back and erase our progress every time, what's the point? So, we are weaning again, starting today.
We started looking into the ketogenic diet at Mom's suggestion. Johns-Hopkins hospital has had a lot of success with it, and for Jack it would be a matter of mixing formula to start, so it's a good time to see if it works for him. That would be a commitment of at least one year on an extremely strict diet. Ketogenic requires a ratio of fat:protein:carbs that is measured to the gram, and it's very time-consuming. If there were another drug option without the side effects, we would take it. So, Dr. Chacon, though supportive of the keto diet, suggested that we reconsider Sabril (vigabatrin). The concern with it is a 30% chance of permanent damage to peripheral vision. She says we can avoid that by giving it for three months at a time, instead of long-term. I don't remember if we were given that option before, but in light of our new harder choices, it seems silly to pick the difficult road before at least trying this. Jack will make progress, and be happy and healthy. There are no behavioral side effects. If stopped after three months, won't spasms come back and erase our progress? If the spasms are just intractable, then yes. But if we weren't giving enough ACTH or for long enough, then no. Jack's body didn't tolerate ACTH very well, so we stayed at the minimum dose to suppress the visible spasms, but that wasn't necessarily enough to normalize his brain patterns. Of course, Sabril may not actually work at all. It's best on cases of tuberous sclerosis, which isn't Jack's problem. We still don't know what caused the infantile spasms in Jack. The ketogenic diet may not work either. Unfortunately, steroids are the most effective treatment, in the broadest range of cases. Of course, statistics mean nothing, as all treatment options only have to work in one case: Jack!
Nick just called and said Jack's blood pressure is trending down, so I think he'll be let out tomorrow. He's out of PICU and "on the floor". (What an expression!) We have had genuinely compassionate and capable nurses through this, and that is a great help. I'm always proud when I think of the nurses our family has contributed. What would any of us do without you?
I'm going to fall asleep any minute now, so good-night. Tomorrow will be better!