Playdough

Emma created these using the box of play-do toys from my childhood! It was fun. (I helped.) We were missing the eyes for the elephant and I suggested beans. Emma countered with "Coffee beans!" So many uses...

Happy Birthday Mom!

Jack's Birthday!

Jack's party was a success even if he did sleep through it!

Settling In

Last time I wrote, we were still in demolition mode. Now we've moved in and the house has come a long way. In November, the kids and I drove to Monroe and spent five lovely weeks. We saw Domini, Dave and three kids on the way there. They grew to four kids by the time we passed back through Fort Worth! I was so happy to meet Caroline Elizabeth and Emma was thrilled to be with the Cooper gang again. They are such a happy fun-loving group.
I spent a lot of time marveling at Monroe's natural wonders: trees. I guess I really missed them. Now that we have a big backyard (by our neighborhood's standards), Nick has promised to plant a Southern Live Oak for me. They don't get all sprawl-y here, but it'll be big and shady year-round.
The primary reason to drive 21 hours is to see family, of course. And we had a wonderful merry-go-round of parties and drop-ins. Lots of quiet nights at home, too. We went for walks around the neighborhood and tried out some playgrounds. While we were living it up, Nick was working like crazy trying to get the house ready for moving in before Christmas.

1-13-2012

Click on the picture to go to the album.

Gotta go, but I hope to continue this post soon... Life calls!

Remodel Update

I don't know how to move these around to the right order. But here's Nick taking apart the pony wall between the kitchen and living room. Don't worry, the electrical to that area is off! It's all steel framing so a little different to demo. Basically, he's taking the screws out and dismantling it. More tedious, less dramatic photo opportunity.










Here is the gutted bathroom. All that's left is the wall at the back. It's full of loose fiberglass insulation, so we're going to tackle that another day. The metal wall midway will come down as soon as we are confident it isn't structural! And the large opening leads to Emma's room . It had a pocket door, but will be closed up.


Woohoo!


This is what it looked like before. Very cramped. Too many walls. We're confident it will feel downright spacious in this 6'8" x 11'6" room.







This is the house without tile or baseboards. A very painstaking process that was mostly accomplished by Nick and a couple of guys from the farm. There is still a little thin set to get up. It's a very dusty job. I have a feeling I'll be cleaning thin set dust and dry wall dust for a long time.

Pictures of the new house

So, the wait is over and we can get into the house and start tearing it up! My first remodel and I think it will be fun. (Famous last words, right?)
Here's a link to my web album, including a short video. BTW, I didn't edit it, I actually thought I was recording from the beginning.

https://picasaweb.google.com/kshipley3/20110928?authuser=0&authkey=Gv1sRgCMW-oe3glPWXSQ&feat=directlink

I just want to mention that it does have a spare room. :)

It's been a while. All I can remember between now and my last post in June is that Andy and Quinn got married! Since most of you were there, I don't need to tell you we enjoyed the heck out of that week.
In some ways I've used this blog as a way to keep you all up to date on Jack's news, good and bad. I wanted to share each step of the journey personally with you. Now Jack is just Jack and he has a cold right now, like any other sibling of a pre-schooler! We continue to look for a diagnosis, but with a little perspective, I hope, I try. One tidbit is that we are weaning the ketogenic diet. Now we are on a slightly less severe ratio, still formula, and the acid reflux is 100% better. So I know he's gotta be happy about that. I sure am. It was out of control (and gross and so stinky). We are waiting to get an EEG before we go any lower, just to make sure the Infantile Spasms doesn't come back. The diet was our miracle cure, but I'll be so excited when he can sink his new molars into a teething biscuit! Oh yeah, by the way, he's getting those back teeth in and not enjoying it. I expect he'll be off the diet completely in a month.
In other news, we are buying a house! We've been in a nice rental in our neighborhood since we sold the house. I may have mentioned that we decided against building a house. I didn't love the lot we were going to build on. It would have been noisy and not likely to appreciate to the cost of building, so theoretically starting out underwater didn't seem like a brilliant plan. We really really want to live here in Civano. It's so unique, we just can't see living anywhere else. So we were waiting for the perfect house to come up. I wrote a friendly note to four of the best houses in Civano asking if they might consider selling to us. This was Mom's idea, by the way. The very next day, the owner of the best of the four, calls me and want's me to see her place. Three days later, I do, and she already has a "hold" on a house she wants to buy! That's Friday. Tuesday, Nick sees it for the first time, signs the purchase agreement, and we have the inspector through. Crazy fast. Now we are just waiting on the loan to process. Closing is set for September 22. All because of a little initiative! While we wait I am getting really excited about the remodeling. The house has a lot going for it already. What we're budgeting for right away includes paint, floors, trim and the smaller bathroom. Our bathroom needs work too, but it will take some pondering. There's a lot we want to do over time; little things like nicer doors and ceiling fans, etc. The yard is a huge blank canvas. And that's one thing that makes this house so special is the large lot size. Also it has a three car garage and a long driveway; Nick is very excited about that! So, modest house - great outside! Our lease is up Dec 31, so we'll move in right before Christmas, probably as soon as I get back from Monroe. Throw that in there too - The kids and I are driving to Monroe Nov 7 and coming home Dec 7. Nick will fly out for Thanksgiving weekend. Extra long because we are taking the drive over three days, and Nick will go camping with friends one of his weekends alone, and he will get a lot more done on the house with us gone!
I need to go to bed, but I promise pictures will be posted as soon as we can get in the house!

This is Emma going in for her first day of preschool! Notice the frog lunchbag, she's very proud of it.

Glasses

Jack in his new glasses!! It makes a huge difference for him to see up close.

Tests Normal

Just a quick note to everyone...Jack's two genetic tests came back normal! Very good news. One was more serious than I was letting on, the other was more general but still a relief that it didn't turn up anything. We will keep looking for answers from time to time, but, so far, it's better to have no answer than the answers that other IS kids have. No known cause is called 'idiopathic' and it's the idiopathic IS that has the best success rate.
I wanted to share with you also that Jack is enjoying life in his highchair in the last few days. He can't sit independently, but the highchair gives enough support and puts him up closer to us. I hoped to have a picture of His Cuteness, but took a blurry one on my phone. Soon I'll get a better one and put up more pictures in general.
We're going to a wedding at a ranch tonight. It's going to be brisk up there in Oracle. I hope they'll have live music and dancing! :) Emma's very excited about it. The whole family is going, so there will be help holding Jack and corralling Emma (corralling - get it - Ha!) This is a friend of Nick's through work. He and his fiance are horticultural people.
This morning Nick is knocking out the to-do list on the old house. Tomorrow the cleaners come and Monday everybody signs! It will be official by Wednesday - the easiest house sale in history!

The Latest

I think it's time for an update. In my last post I mentioned that we had decided to sell our house before building. The hard way is often the right way. So we spent about three months getting it ready to list and had a sign out front by early March. You can see the pictures on www.zillow.com; it looked the best it has ever looked and I wanted everyone I know to attend the open house! But we never made it to the open house; it sold within two days!! We took the RV east to explore the Chiricahua mountains, get some much needed relaxation, and to allow the house to be available to show by realtors. During the week it was going to be by appointment only, which isn't very convenient for them. Had a lovely time completely out of phoning range. On the way back, I turned on the phone to call our realtor who said that a client of his made an offer Saturday afternoon for exactly what we wanted for it. Very exciting! The whole process has gone very smoothly. Home inspection went well with just a couple of minor things; appraiser has been through but we don't have a final number from him yet. I'm told not to worry. This couple put down about 50% so even if it appraises a little low (and it shouldn't), it won't scare the bank off. Closing date is April 15 and we have found a great house to rent. Happens to be owned by an old climbing friend of Nick's who is willing to fire his property mgmt agency and rent to us directly. The agency was over-charging tenant and owner for every little thing, not returning phone calls, and the other typical stuff they pull. That business is for real estate agents gone bad. Anyway, Tom will let us out of the lease whenever our house is built, which no one else would be willing to do I'm sure. That's the main thing among other benefits. So, we'll move in in the first week of April. It's a nice place, single-story and very spacious. We had looked for a smaller place to save money, but nothing good came up for rent, and this is still less than our mortgage. So, Gram, there will be plenty of room for you! And anyone else continues to be welcome. We won't be roughing it at all!
The next step, after settling in, is pulling out the house plans again! I think we will continue to love the basic framework that Mom designed. We're thinking that we might hire an interior designer to take over the millions of decisions that need to be made. She will be able to contribute to the plans from this point onward, so that will be our first task - to find her. I expect it will both broaden our options and save us the legwork of searching them out. If any readers of this blog have been down this road, please advise!
Ah, kids...Emma is now three. She asks everyone when their birthday is, presumably as a polite lead-in to talking about her recent birthday. She will be starting pre-school in July, I hope. Every night she asks about what we are doing tomorrow. It sounds like this:"What is it today?" Then we talk about it and she tells me that she is going to dream about it. Emma is generally cute as all get out, but occasionally whiny and obstinate. In other words, a typical three year old. She is really into books, which is wonderful. Begs me to read to her and sometimes tells the story to herself. I have a sneaking suspicion that she simply uses reading together as a way to have my undivided attention. Fair enough, I say. It's effective alright! Gram gave her The Color Book and it's her new fav- visually and conceptually brilliant. (Thanks Gram!) I'm very pleased that she has taken to my beading present. It's medium sized wooden beads to thread on dress-shoe strings. She can really do it and it holds her attention. I rarely give the favored present, so I'm excited about it. I can remember those hoppity balls in the gym at Good Shepherd, anyone else know what I'm talking about? They have a handle on top, which you straddle, then you bounce around. I got her one of those and she likes that too. Mom gave her a talking Dora doll that sings "Feliz Compleanos" Dora showed up tonight when, after going potty, Emma ran downstairs to get it and gave me a little performance before I could get her panties and jammy pants back on! Little stinker.
Jack is doing pretty well all around. An EEG on March 10 showed that the brain pattern background was "improved", in other words, better, but not great. The other seizures he's been having seem to be more frequent than we thought, however, they have become less and less severe, to the point that we haven't seen one at all since around that week. This means that even if the frequency is at a worse starting place than expected, the intensity has drastically improved, and presumably the frequency will also improve with time. All in all it showed that the ketogenic diet is working. Hurray! Jack is off all meds except for Prevacid to help the acid reflux brought on by a high fat diet. Incredibly, he gets therapy most days. PT, OT, and a child development specialist are seeing him at home weekly, all are provided through the state's program for developmental disabilities. In addition, volunteers from the neighborhood spend two hours working with him on the days he isn't visited by the pros. I am just blown away by how much support we get from our wonderful neighborhood. I'm sure you've all watched the video of Jack laughing. He sort of cracks himself up sometimes, but he is also very responsive, and ticklish, and focused at times. He's used to being on his tummy now and has a stronger neck and upper torso. He works himself around in a circle on the floor if left to his own. That's amazing to me. I feel like he's just about to turn a corner in the next month or so, due to all the work everyone is putting in and to the diet. I see so many encouraging signs. Being ticklish all over tells me that his "gnostic sensation" is at the next level, it means that he can distinguish between mild sensations, recognize whether it is pleasant or unpleasant, and respond appropriately. That's an amazing organization of sensory input and motor output! So, Jack is doing great and we are really proud of his efforts. I'd like to leave it at that, but you all know we saw the geneticist February 28. He ordered a couple of tests: one is a specific (and scary) RARE genetic mutation that he either has or doesn't have; the other is more casting around in the dark to see if we stumble on something. Both will be back in about 6 weeks. And so we wait. While we wait, Jack will continue to delight us with new achievements. :)
Is there news on us parents? The house sold. We'll build a new one. I'm slacking on my running (if I had just one hour per day that was mine alone...and not at 5am, Nick, thanks for the suggestion, though). Nick is very happy to be project-free on the weekends. We have a date Saturday night. Hola!

Jack Laughing

And the rest of it...

On the home front, we have decided to sell our house first. Then move into a rental and start to build our new house from there. Less stress. So, I have been diligently packing up to list the house by Feb 1. It's nice to live without the clutter, I'll tell you that. House plans are almost there. Just have to keep tweaking things until they're perfect. The hardest part is conveying the exact look of the exterior to the architect. And deciding on a color! Driving around Monroe gave us some good examples.

Kathy and Patrick were here for a couple of days and that was nice. Both are a big help around the house, boxing up and the like. We didn't do much else. Went to Target, which is a big treat for Emma!

I can't think of much else going on...just excited about Jack. Optimistic days.

2011 - New Year

Has it really been more than two months since my last confession...I mean, post? And what a terrible post to leave off at! I think I did kind of hit a wall around then. Part grief, part fear, resentment, exhaustion, and frustration! It's been a tearful couple of months as I actually experience all the emotions I had been keeping at bay. I'm feeling pretty good today, though.

We started the ketogenic diet on December 30th under the advice of Jen Avis, who works with Tim at the diabetic clinic. Shockingly, not a single dietitian in Tucson has been found to have experience with the diet. Why, you ask? Because doctors don't prescribe it. Jack's ped. neuro. worked with someone from Boston Children's hospital and thinks the diet is great for parents who can do it. She's been in town only 2 years and I think she's as surprised as I am. But it was on the agenda at a conference she attended in Cleveland this year, and was widely supported. Anyway, for Jack it shouldn't be as difficult as I originally thought. Jen convinced me that we may as well stay on the formula for the whole year if it works. There is no way to manage the fat:protein:carb ratio with food as well as it is done with the formula. He will have his whole life to enjoy food when he outgrows IS. So, every night I mix 110g formula with 550mls hot water and divide it by four bottles. That's about 5 oz per bottle. 752 calories per day. We can add more water, if he seems to need it. That amount is calculated to give him slow growth, so periodically we'll go up on the calories. He has adjusted to the taste well.

For his other meds, we are weaning the Sabril and Phenobarbital slowly. He is on a good dose of Keppra still. All of the above need to be carb-free. That meant switching to a tablet of Keppra, brand-name only, please. Let me put a question out there for anyone to comment on. We are having a lot of trouble getting Jack to take meds lately. The Keppra is very bitter, and he notices it even crushed into 5oz of formula. The Sabril is in water, how do we get these two down him? It's a real struggle BID! That's nurse-speak for twice a day;)

At night when Jack's phenobarbital levels are lowest, he has such a wild time! It's fun until about 10:00pm., when it isn't. But last night, he LAUGHED! I mean, lots of real laughs. I was blowing raspberries on his neck and I guess I just found his tickle spot. And let me tell you, if you didn't know, the sound of Jack laughing is like crack to me. I can't get enough! He was jumping all over the place and having a grand old time. I hope this means the diet is working.

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!