February 2008

Today, we said goodbye to Grandma Judy and Grandpa Bobby. They’ve been in Northern California and are now moving on to the next phase of their 2008 plan. Big moment, big moment, big moment. Grandma Judy and Grandpa Bobby have done so much for us over the last 5 months. I can hardly believe it’s been that long. Aaron and I have collectively decided to block out (or edit) the month of October last year, so it’s more like 4 months that they’ve been here- but even so- we can hardly imagine life without them. I can still remember standing in the parking lot of the Stanford ER crying into the phone with Judy and telling her Sophie was critically ill. Suddenly their grand plans of heading to Arizona casually to snow bird flew right out the window, and they were doing a beeline in the Motor Home to support us. Once again, we were reminded that the right people show up in a crisis.

We’re down to be last 3 weeks of Early Start therapy before our benefits expire. It’s so hard to believe it’s been 3 years and now we’re done. The good news is that we are done. Should we approved to get additional benefits it would mean the babies were 70% developmentally behind, but luckily we don’t’ qualify. However, we are clearly moving on to a place in our life. Looking for pre-schools almost feels more challenging for me than trying to decide on a college. What if I pick the wrong school? What if they’re not successful? What if Sophie can’t adapt? This is such a big step, and I don’t want to screw it up.

We’re still watching Trent’s reflux closely, and it’s clear that when he’s off his meds– he hurts. We ran out of the prescription earlier this week and due to some insurance and supply issues- we can’t get the refill until tomorrow. Even two days without it clearly makes a difference and makes me worry that meds can’t be forever and we may never grow out it. He also now has the ability to articulate discomfort and was quite direct this morning that he was in pain. Listening to his little voice say he hurt was just heart breaking.

It’s a been a busy weekend for the Keene family. Oh the rain- So typical but so hard with toddlers. All they want to do is go outside. Aaron’s mom has been watching them all week, and she’s been completely amazing coming up with things to do to keep them occupied. Occupation, though, can only last so long, and today we decided they must get out and run. The perfect place for such a thing is the children’s discovery museum. The place is total Silicon Valley with most activities all targeted at small children. Whomever came up with it is clearly brilliant. We’re now members and know we will get every $ out of our membership. They have many, many cool interactive exhibits (museum is a misnomer), but clearly the ambulance- which you can climb in was a huge hit for both babies, the water exhibit for Sophie in which you watch/participate in water moving objectives (hence the pictures with the aprons) and a ball moving exhibit that Trent couldn’t get enough of. Our whole goal was just to let them run, run, run burn energy. The funny thing though was that once we left they were both exhausted – crashing on the 5 minute drive home and acted like they wanted to take a nap, but I was the one who needed to lie down. Yes I’m a week post op and am still not to life (not easy with toddlers who consistently ask to be held), but Aaron took all in stride. We went on to watch the Oscars and have a lovely dinner with Aaron’s folks. The babies clearly didn’t get the award ceremony but thoroughly enjoyed the music and danced around together.

I can’t believe they’re almost 3 and as hard as it is for me to acknowledge that, they really are toddlers- I did finally move to that big step this weekend of ordering them real beds. Big step for me. My plan is to donate our cribs to the Ronald McDonald house at Packard. Our new beds will require some furniture moving and removal of our chest of drawers, but it is clearly time. I know that nice new big beds for each baby is the right way to go and will surely make our nighttime routines go smoothly. Who knows- it might even be time to get rid of our swings? One step at a time though.

We’re nearing the end of our Early Start services (we completely age out at the age of 3 and their delays (Trent shows none and Sophie’s are too minimal to meet the state standards) don’t meet the criteria, so it looks like we’re done. The “you’re not qualified- here’s your hat there’s there door” comes in the form of a certified letter – one for each child- from the county. Aaron and I are still trying to decide though what to do about Sophie. Although she did awesome today on the stairs at the Children’s Discovery Museum, we do think she could benefit from additional physical therapy and speech and may decide to pursue it on a limited basis with our private insurance since she clearly has demonstrated change is not her thing. Trent on the other hand is clearly done with all services, and we just need to make sure we’re continuing to challenge him on a daily basis and make sure he keeps developing new skills.

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So we’re figuring out our new schedule with Aaron’s new job. A few little bumps but now we’re getting into a groove. It’s so nice to have Aaron around more and no longer starting his day at 4:30am. The babies are so happy to have him home in the morning. At first he was less than thrilled that they got up at 6am, but now we’ve all agreed that we have a schedule and we just need to work together.

This morning they were both early trying on my shoes in their sleepers and running around the house. Sophie surprisingly went for the flats while Trent went for my running shoes (there is quite an assortment to chose from). It was so cute to watch. They love each other so much. Constant playmates.

Today I got the results pathology results from the endoscopy Trent had last week. I played phone tag with the nurse practioner for a couple of days, and since she just didn’t leave a message “with all looked good” I had a feeling it wasn’t. Not horrible but not great. His esophagus is definitely irritated by the reflux, and although the meds are helping (he’s at the maximum dose now of pill he’s on) we just have to watch him to make sure he’s eating. So the next 6 months will be a test to make sure he’s eating, not so fussy, and is comfortable. Hopefully he’ll grow out of this, but if not, he’ll have to have his esophagus that doesn’t close properly surgical fixed. I know I’m over simplifying it but that’s pretty much it. In spite of all this and continued concerns about his kidney- he’s doing incredible things everyday and turning into such a little man- I just know he’ll get through all this.

Our Sophie girl is growing like a weed. She hungry 24/7 and wants lots of sleep. She’s not filling out but definitely growing taller. Her hair continues to grow but I can’t wait for her to grow out a bit longer. More than one person in the last week during our festival of doctor’s appointments said something about what a “cute little boy” she was. People are clearly lame- she looks like such a girl- but it’s hard not to get my protective mama back up – and get upset.

Everyone has always told me that children grow up too quickly and now living it- I definitely have to agree. Tonight Trent met me at the front door telling me he was getting ready to go to school and that he wanted to go with Charles (his unofficial big brother who lives next door) He so wants to be a big boy and reminds us that he needs to wear big boy pants (underwear) so he can go to school. Sophie on the other hand, isn’t so interested in school or speaking and that’s a worry for me. I know she has significantly more challenges but it sure is hard as a parent not to compare their progress and worry when she’s not keeping up with her brother.

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It’s been a long couple of days for the Keene family. Lots and lots of appointments and procedures. Last Thursday we took Sophie to see Dr. Edwards for just a check up. Unfortunately Sophie wasn’t feeling herself and just wanted to sleep. We were sure it’s just a cold but Dr. Edwards was clearly concerned and took me through the routine. Call if she doesn’t get better and we’ll do a scan. He was sweet though. He said it was nice that he was able to see one of his favorite ladies (outside of his wife, daughter and grandchildren) on Valentines Day. Sure enough- Sophie clearly demonstrated she had a cold this weekend and neuro called today- just to “make sure” Sophie was ok. We have such and awesome neuro team.

Thursday also had us in the in for renal ultrasounds. Thank goodness for Grandma Judy. Definitely not a one-mama thing. Trent was such a guy. Please, thank you, ok- he just bucked right up. Sophie on the other hand was totally dramatic (I’ll be it she didn’t feel well but – honestly- could she have been more of a drama queen? crying through the whole thing as I held her. Trent’s though was easy. He lay on my lap and they said “Woohoo – look at the amazing blood flow and size of his right kidney!” but hmm we didn’t say it and you know the drill- you have to wait for the doctors report. The tech also said she was pretty sure she remember us from the NICU and knew that I wanted to know. The blood flow is FABULOUS news so now we just need consistent and focus on the C in consistent blood work to support the findings and we’ll go back to the days of amusing he’ll just have one kidney that will need to fully step up to the bar. Sophie girls though were much harder to see because she has one that is fussed right in the center of her body. Lots of rolling back and forth, which she clearly didn’t like at all but finally we got a fairly good, scan which told us that things are – status quo. I’ll take that anytime.

Friday I had abdominal surgery and the hardest part about the whole thing is that when the babies say “I hold you” and since Sophie hasn’t been feeling well she say’s it frequently- I can’t. I can bend down but I’m not supposed to pick them up. I’ve tried to show them my incisions, bandages and bruises-, which had led to many kisses, but still they’re struggling to understand why I can’t pick them up. Thank goodness once again for Grandma Judy and papa who have been right there and picked up my slack.

We’ve all got colds though. Trent started it and now Sophie and I have it. Today Grandma Judy and I took them to the pediatrician (what holiday?) and although it wasn’t our regular doctor she was the one to last see Sophie when she had her shunt infection in October. She couldn’t believe we’ll be 3 in a couple of weeks and Trent hadn’t been there since May. I think we’ve stretched the doctors in that practice. More than one of them has told me we’ve taken them back to places they haven’t been since residency and that we’re the smallest babies they’ve ever had in their practice. We’re reminded again how fortune we are to live in the Silicon Valley with the most amazing medical care.

We’ve come so far. Today Grandma Judy watched the babies (our nanny is on vacation this week). Last time Grandma Judy watched them she lost 7 lbs and people at her weight watchers group asked if the twins could be rented out. We’ll consider it. It’s going to be a long week but we’re thankful for family and that the festival of appointment was last week We’re still waiting on the biopsy results for Trent but other than allergies – don’t expect to hear anything earth shattering. Same for the renal ultra sounds. I’m assuming we’ll hear that they looked good and we just need to do the follow up blood work in 6 weeks to confirm the C in consistent for good news- and the trend of normal Creatinine and renal function.

I’m praying tonight both toddlers (yes, I know it’s time to refer to them as toddlers) for lots of sleep. Sophie was up and down several times last night and the lifetime movies were so LAME that it made it a real challenge. Hopefully we’ll all move through our colds soon, Aaron won’t catch it and spring will come SOON.

It’s only Tuesday but already feels like a long week – both in a good and bad way. As always though the good is definitely outweighing the boy. Yesterday I heard from the renal clinic and got the amazing news that Trent’s repeat blood work did not show the same increased creatin level. It’s still elevated but for now assuming his urine test (assuming I can ever get one), the kidney ultrasound he’s having later this week, and repeat blood work in the next 6 weeks continue to look good- it looks like we can honestly say renal failure is not a concern at this time and the bad blood work was just a fluke. He’s also starting Iron to treat his anemic and address the concerns with his hemoglobin. For now we’re just breathing a GIANT sigh of relief – but continue to be cautiously optimistic. For now though- we’ll just enjoying the wonderful news that all is not as critical as we were told 2 weeks ago and we continue to take it one day at a time.

This week is loaded with appointments and Apple product launch, Aaron starting a new job and me being very happy that Aaron’s folks are still in town and are helping us juggle. Today Grandpa Bobby and I took Trent up to Packard for his endoscopies. The objective of the test was to look at his esophagus and determine if he had an anatomical issue, an allergy and/or the source of his choking and swallowing difficulties. He was required to be put out for the procedure but did amazing well. WE were also blessed to have Dr. Olga for anesthesia that has done all but one of Sophie’s procedures and knows us. He was such a strong little man. He came through the procedure very well and is showing minimal signs of discomfort. The whole procedure only took 30 minutes and by 12pm we were home. He’s hoarse, loving his popsicles, and a bit tired, but overall rebounding quite well. The doctor took several biopsies to determine if he has allergies and/or the cause of the discomfort and by Monday we should have the results. We’re not overall concerned and know that the outcome will probably involve different meds and surgery is only a very, very last result.

Thank goodness for Tia and Aaron’s folks. While Bobby and I were at the hospital with Trent, Grandma Judy hung out with Trent. Once we got home, Tia came over and took over. Sophie regular physical therapist is out on medical leave and for the 3 weeks remaining with Early Start, Sophie has a temporary therapist. I’m not kidding myself. I know she’s a difficult, stubborn child and I can own exactly where she gets that behavior. However, as much as we want to – we haven’t been successful in chasing her personality and when she’s done- she’s done. Unfortunately she quickly was done today with her temporary therapist. So much so that Tia (who is always beyond sweet) came over tonight to tell me she didn’t think it was worth it. I’m actually not surprised. I know Sophie doesn’t do change well and we’ve learned over time that we must pick our battles and this probably isn’t one we need to do for a therapist we not all that impressed with anyway.

Hopefully tonight is a sleep night. Last night (this morning) they both wanted to PLAY at 3am and it was such a bummer. They’re so cute when they play but both Aaron and I could’ve done without the 3am energy. Needless to say by 5:30am when my product launch rolled around- they were both crashed. Apparently they’re much more interested in iPods than software.

It’s been a busy couple of days but we sure have enjoyed the wonderful weather.

Aaron came home late Friday night from his trip. We are so happy to have him home Trent and Sophie were so excited to see him on Saturday morning. Talk about instant smiles- there were both over the moon to see him. Yesterday he was kind of beat so I took them park so Aaron could rest. I hadn’t seen Sophie at the park since November (the winter weather had made park days especially hard) but was just over the moon to see her progress. Trent of course has also been Mr. Monkey but Sophie is clearly a different child from November. Yesterday she was hanging from the monkey bars, climbing the ladders without fear, and was just overall- as fearless as her brother is. I was so proud of her. It’s amazing the progress she has made since her head was finally fixed.

Today I took them to the mustard festival in an old, old orchard in Saratoga with my parents. They both enjoyed themselves so much. The tired out several of the many tractors, took a ride in the horse drawn carriage, checked out the petting zoo, bonded with the goats on leashes, ran all around the orchard and picked mustard flowers. It was so much fun. A very special day with Grand parents that both kids thoroughly enjoyed.

Tomorrow we’ll get the results on the 2nd round of blood work related to our recent renal visit. We’re not holding out much hope but at least we’ll know what comes next.

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Once again I was reminded how funny life can be and how somehow the right people end up in the right place at the right time. I emailed Packard today to try and get the results of yesterdays blood work and although I knew it was probably to early to get them- and got a response from one of the nurses who helped deliver the babies 2 1/2 years ago. She is now part of the renal clinic team. She clearly remembers us and I remember her telling us how she was on our delivery team the night I gave birth. She’s such an amazing lady and I couldn’t be more thrilled. I guess it’s only fitting that she now is on the team that helps see us through this very long process. Thank goodness for email and medical personnel who understand my need to process information. Our appointment isn’t until March 5th but I sure would appreciate the time (and I’m sure be a better mommy and adult) if I was able to get the results before our appointment so I could be mentally prepared by the time we get to our appointment in March.

The quest for a urine sample goes on though. This morning I tried for over an hour to get them to pee in a cup but I had no success and handed the baton to our nanny Doris. Who ever thought this would be so hard? She worked and worked at it but no luck. My plan “B” is to have Packard try and do it during Trent’s procedure on Tuesday but hopefully we’ll be able to get it before then. I never thought I’d be in a place to walk around with lab orders and sterile bottles in my purse but I’m kind of at the point of —- whatever works…

It’s hard without Aaron. They babies are so busy but we’re managing. Last night while I was asleep the got into Aaron’s drawer next to our bed and just had a festival with throwing everything around. He had cleaned out his wallet prior to his trip and this morning I awoke to find his credit cards scattered throughout the house. They were everywhere. It was just like 52 pick up. How can one person have 4 Nordstrom cards and if so- why have I never benefited from his ability to contribute to the retail economy? Geez- no wonder he cleaned out his wallet prior to his trip- I guess he didn’t’ want to pay for the extra seat his wallet would need. Although the babies have figured out the computer, thank goodness they haven’t quite mastered the Internet. We’d surely be in financial ruin if they’d partnered his cards with the internet.

We are so thankful that Grandma Judy and Grandpa Bobby back in town. They’ve been so great about helping with doctor’s appointments and coming over until I get home or have to take one of the kids to an appointment. Next week- it’s all about appointments. A long week but we’ll be so glad to get Trent’s esophagus looked at, Sophie ‘s neuro status checked (we’re sure is absolutely fine) and the ultra sound done all their kidneys. It will just be one of those weeks where we need to buck up and knock it all out at once.