January 2008

So I’ve decided that I need 48 hours of a pity party before I buck up and — here it goes.

I hate the fact that while I had in my mind that Sophie would always have medical issues- Trent now has them too. I hate the fact that for as far as they’ve come- his future is now out of our control and no amount of love can fix this. I hate the fact that he has to have more blood tests that will just confirm what we already know but we must do it because we’re having a group denial. I hate the fact the infant/urine bags suck and I now have to stick cotton balls in their diapers and manage a syringe. I hate the fact that the renal clinic is in a crappy building 70’s building that has a moss green lobby (so much so that when I wheeled in the babies in their stroller I told them “ the 70’s called and wanted their building back” with an elevator that is non ADA compliant and makes me turn my twin stroller sideways to get in it (in a very expensive part of Palo Alto). I hate the fact that Stanford asks you to fill out the lame survey about wait times that never changes anything, requires you to juggle a clip board while managng your double stroller through doorways in which is does not fit, handle a diaper bag and still wait while the doctors run late. I hate the fact that we will now have a long-term relationship with the clinic.

But most of all I hate the fact that my amazing little man who has come through so much in his short life and spent the evening was trying to help his sister learn how to use the hippidie hop balls they got for Christmas- has to go through all of this.

I know we’re in for a long, long road but for tonight- I just need to have a pity party and cry. I know I can step up tomorrow (we need to do the next set of blood work ASAP) but right now- I just want to be sad for a few hours more.
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This is very hard to write but I’m hoping somehow writing it down will help make news we received today sink in. I truly expect the nephrology appointment would be a no brainier. So much so I almost cancelled it. However, once we bucked up and did the blood work, I figured we should follow through- even though I’d know it would be a pain. Typical Stanford though- our appointment was scheduled for 10:30 and by 11:45 and after a whole bag of gold fish in a very small exam room- I decided we were leaving since the doctors had not yet come. I had brought toys but once again, the desire to play with the medical equipment in the exam room and decorate it with gold fish crackers definitely beat the toys I brought. So I packed them up and was stomping out through the waiting room when the fellow came out and said I couldn’t leave and she had some bad news…

It turns out Trent’s blood work was significantly worse that it was a year ago. It could be a fluke but the doctors don’t think so. The hard part about all of this is today there is no medicine that will fix this and although it’s not immediate (and could be as long as 10 years) the end game is kidney failure. I can’t even believe this. I told them that he’s completely normal and they said he’d continue to act that way- until he can’t. Once again, I cried in front of the doctors and actually continued to do so all the way down the freeway. However, now when I cry in front of the babies they seem to understand and ask me why I am sad. They just want to help and don’t understand. Sophie’s result s weren’t great either but the change in Trent’s is much more significant and scary. So the plan now is to redo all the tests and then go back in two weeks. I cannot believe Aaron and I can’t fix this.

We do have some extra help though. One of the nurses at the nephrology clinic is a close friend of our neighbor Jean and has come to know me over the last 3 years. I didn’t see her today in clinic but Jean called her to see if she could help explain this all. I spoke to her this evening and she tried to reassure me that although scary – we can do this. She said she can read through the paperwork tomorrow once it’s transcribed and translate for me. She also said she’d help us navigate the scheduling system and next steps.

He’s just come so far and I can’t believe what he may have to go through. He just loves to play so much and wants to be a big boy- I can’t even imagine him having to go through dialysis and an eventual transplant.

We just have to take it one day at a time- and face everyday as it comes.

I’m learning that it’s all about the strategy. There have been many to days for me – what to where when I know I have a big work event and need to look very professional but also know I’ll be participating in the babies therapy (which definitely does not lend it to a skirt or dress), and it’s all about planning. l’ll be it self absorbed – but figuring out how to get a mocha in to my day when we have appointment without involving the car, the car seats, still working and managing a stroller that has a crappy cup holder—- it goes on and on.

So tomorrow, it’s once again about strategy. The babies have their annual appointment with the neurphology clinic (kidneys) for which we’ve received no less than 3 voicemails reminders about required lab work and the importance of the appointment. We’ve done the blood work, failed at the urine test (again) and are completely aware what time we have to be there. I had this grand plan for tomorrow but tonight our nanny called to say she had a doctor’s appointment so now I’m retooling. Our weekly staff meeting in cancelled since my boss is at an offsite (about which I did the full happy dance weeks ago when I scheduled the appointment) but I know that I need mocha. The neurology clinic requires incredible tolerance – always running up to two hours behind (and is always bad news) so a cup of good coffee is key.

For whatever reason Silicon Valley only has two (yes count them two) drive thru starbucks. Of course neither is in my traffic pattern for tomorrow. The situation definitely required calling in reinforcement so I called our neighbor Jean. Aaron thinks I’ve completely lost it with my focus on coffee- but once again, our neighbors are coming through. I’ll be ready with lots of toys, there’s a probability that we may destroy the waiting room if we have to waiting for an hour and we may get doom and gloom about their kidney production but at least I’ll have had my caffeine. I just know I have to buck up. Sophie also has speech in the evening so hopefully she’ll have a long nap before therapy so she’s ready to completely work with Lisa. Our services end the second week in March and although I’m working on the next step plan- I want to make sure we get the most of every therapy session we have now.

It’s been a busy Keene weekend. Yesterday we took the babies to El Camino hospital to get their blood and urine tests done in preparation for their nephrology appointment. Every part of me has wanted to cancel the appointment but I know it’s important and as much as the tests are a pain- they need to be done. Once again though we failed at the urine tests. The bags are such losers (or we are). We tried our best to get them on correctly and Trent’s looked secure but he just didn’t come to the party (despite us giving him LOTS of water) and Sophie’s bag just fell off. So there you go. El Camino hospital is a great hospital but definitely not a children’s hospital. Could they have moved any slower as our toddlers waited for us to call them (mind you there were only 2 other people in the very large waiting room)? Much drama about what didn’t print or did as I tried to hold Sophie and later Trent in the blood draw chairs. So not fun. Sophie ofcoruse immediately cried as she saw the folks in white coats (clearly a left over from her crappy October experience) but Trent – mister calm – even saying “thank you” as they put the thing around his arm to force the blood flow. Aaron was such a trooper. I did the blood draw while he tried to convince the urine and finally we all agreed to call it a day. I know I’ll get the full lecture again from the nephrology doctor about not completing the tests but now that I know they can do the cotton ball in the diaper to get a sample-I just may proactively prepare for that on Wednesday. Saturday the first time Aaron and I had done tests together and I think he now has a better understanding of the drama that goes with this. I could tell that even he was about ready to lose it while we waited for the half conscious tech signed us in a moved very, very slow.

Last night we had Grandma Carol and Grandpa Pa George over for dinner. Funny I never imagined my dad in purple sunglasses playing a plastic guitar but he stepped right up (as did Grandma Carol) They just love, love, love their Grandparents. They are so lucky to have both sides so involved in their lives.

Last night Sophie and I pulled an “all nighter”. Not sure why but she had absolutely NO interest in sleeping. Hours and hours of Mickey Mouse and a wide awake Sophie and nothing worked. Needless to say she fell asleep in her high chair when we were at breakfast this morning and went on to sleep for almost 4 hours. I’m so hoping it was just a fluke and tonight is a full 8 hours.

The rain is hard with toddlers. Today we just figured they would dry, put on their boots and took them for a walk. It took us almost 45 minutes to go 2 blocks- checking out the puddles but they had so much fun and we BURNED energy. I know people say having a child brings out the child in everyone and I can definitely attest to that. As Trent and I were walking I started to sing that 80’s song (Rain- by Orange juice Jones (I saw you and him- walking in the rain- you were holding hands- and we will never be the same…) and pretty soon we were both grooving down Willow Glen Way. We didn’t’ care who saw us and we were both dancing (he’s much more hip than me) The rain can’t end soon enough but at least we can try and make the best of it.

It’s been one of those weeks that really makes you dig within and find what you’re made of. For the last couple of months I haven’t been feeling fabulous and it all goes back to the reason I was 38 and having twins. It’s just one of those things where being a female and having kids was one of those things that just wasn’t as easy for me as others. I’m such an embarrassment to my family. My mother and my sister got pregnant just by their husbands walking by but for me – it got much more involved. Needless to say how we ended up being older “new parents”. In February I will have surgery to make me feel better but this week my doctor decided she need to test me to make sure that she knew what she was getting into in February and wanted to make sure we weren’t dealing with ovarian caner. Wow. What a long 24 hours is was waiting for the test results. It’s one thing to think of no being around as an adult- it’s quite another to have two very special 2 1/2 year olds that you can’t even imagine not being totally healthily for or even worst case- not around to see them grown up. Aaron is such a rock. Lots of tears, lots of holding and worrying but when the phone rang last night and my doctor said – blood tests look good- Aaron and I just felt like once again – someone was looking out for us. I’ll still have to have surgery in February (and won’t be able to pick up my babies) and they’re still be a biopsy but all signs are good and I’ll just need to buck up.
Everyday our little ones continue to amaze us. Such individuals. This morning Trent made a point of dancing around in to the Rolling stone in one of Sophie’s rain boots, one of his, they famous “Keene pink hat” and his play guitar. It was really something to see. Tonight was another festival of hats.
Tomorrow we’ll be off to El Camino to get their blood work and urine tests done in preparation for their nephrology appointment. I’ve been worrying all week how I’d get it done in preparation for our Wednesday appointment but I know- we just need to do it and Aaron and I can just buck up and handle it together.
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Today Trent and Sophie had Early Intervention and physical therapy. Sophie had a tough day but tried her best. We all have those off days but Sophie’s had a few. She just doesn’t seem to have a lot of energy. She eats like a horse but still needs a lot of rest. She’ll still play but is very direct when she wants to lie down and relax. Today though might have to do with the fact that she helped me do an Apple product launch (she loves though) so it was an early day for both of us.
Trent loves seeing Gayle his Early Intervention therapist. She always comes with a grand plan of activities and they both so look forward to seeing her. Trent has his temper but we’re working on it. I have this thing that when I think I want to say something inappropriate about someone or in a situation I always think or say “zip zip” and now I’m trying to teach Trent the same thing. So when he gets mad- I say “zip zip” which he repeats and it seems to calm him down a bit.
They are so connected to each to other and he is so protective of her. This morning she fell asleep in her high chair and he was quick to tell me to be quiet as “Soaphie” was sleeping. He also makes a point of make sure she had her Elmo pillow and pink blanket when she falls asleep on the couch. I was close to my siblings but I’ve never seen anything like the way they are together. Always looking for each other, watching out and endless hours of playing. Aaron and I continue to be amazed at our little ones every day.

We’ve definitely hit the busy toddler stage. They have so much energy. We had hoped to take them to Vasona Park this weekend (a very cool park a couple of towns away) and ride the train there but Saturday got away from us and the weather forecasters were clearly wrong about a nice day. Needless to say, no park today. I suppose it all worked out ok since Sophie didn’t really want to do much except suck her thumb and ask to lie down. We’re chalking it up to the weather and growing. She’s eating like a horse and it seems like her body just needs more rest to facilitate the growing. Trent too didn’t have that great of a day. He has tons of energy but it’s clear his throat is bothering him and he’s not been much of an eater these days. He frequently points at his mouth and we can tell swallowing- eating is uncomfortable. He loves to play though. He spent most of day asking us to read to him and playing with his little people farm set. He just loves to play make believe. He can spend what seems like hours focused on one thing.
Late this afternoon it became quite clear that no matter how chilly it was- we needed to get them out of the house. So we bundled them up and took a walk around the block. Of coruse the walk took over 30 minutes (not a very long block either) but there is so much to see and get distracted by. They even screamed (in happiness) and although we knew the neighbors probably could’ve done without it- it was Sunday afternoon at 4pm and it was all about burning energy outside.
Trent is still sleeping in his crib but does a navy seal routine climbing in when he’s tired and climbing out when he well wants out. I beyond know that he needs a bed- but it feels like such a big step. No more baby- even though he still drags around his blankie.
Sophie sleeps in the double bed in our extra room. We’ve given up on the crib fight and have just called it a day. She does though sleep through the night but has an automatic clock that goes off everyday at 5:30am- and apparently her clock doesn’t have a calendar since she doesn’t get weekends are suppose to be sleep in days. I have decided though that the county should hand out toddlers to promote water conservation. There’s nothing quite like trying to take a shower when you your toddler runs into the bathroom (locking the door is not an alternative since it has lead to house destruction) and wow- you are so motivated to be finished. At least we’re doing our part for the water shortage with 2 minute showers.