November 2007

Yesterday we took the kids out to buy shoes. I know it sounds like a silly, minor event but wow- what an ordeal. Poor Trent is so hard to fit and just fights us when we try to put shoes on him. We learned though that he’s definitely a wide (747 feet) and the shoes that he had were over one size too small- hence the fit when we tried to dress him. Neither wanted to sit still though for a fitting and took the circular tile at the front of store as a dancing platform. Aaron and I were so embarrassed and couldn’t get them out of the store fast enough. Trent was very clear though about what he liked and what felt good on his feet. Life is so much easier now that he can communicate better.

He’s also demonstrated to us that he’s definitely his father’s son and has a new found attraction for the dust buster. We tend to vacuum everyday given our hardwood floors, tile and our pets- so it’s something the babies see us do often. However, for whatever reason- Trent decided yesterday that he was in charge. It was so funny. He kept going for almost an hour until the juice ran out. He’s been so proud of himself. Sophie followed him around for a bit and took her turn but she quickly tired of it and went on to play with other things. She did though keep calling him to come play with her and clearly did not share the same fixation with the dust buster. I’m not sure if it’s a Keene clean thing or just the noise (men and trucks you know) that thrilled him –but once again this morning he asked for it.

It’s hard to believe Thanksgiving is over and tomorrow is back to work and a business trip for me to London. It’s hard to leave the babies, but I know they will enjoy their “papa” time and before they know it – I will be back. I know they will both be fine, but it’s hard not to worry- especially about Sophie. I know she’s fine now and a strong girl (and her doctors have told us we have to allow life to go on), but it’s still hard not to worry about her. Trent, on the other hand, seems so grown up and much for focused on Aaron these days. Once again we’re leaning on our neighbors for a bridge during the morning hours. Unfortunately Aaron’s office is over an hour a way requiring him to leave at 5am so – Jean will be coming over to hang out on Monday, Wednesday and Friday until 8am when our nanny arrives. Our neighbors are so awesome. We’re fortunate that Jean she’s an early riser/ limited hours required sleeper and ok with hanging with the babies. Aaron, too, is such a good guy to be ok with being fulltime daddy and doing the juggling act. Hopefully we’ll be able to arrange for me to do the same for him with a guy trip or something in the near future.
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We’ve had such a nice week and so much to give thanks for yesterday. The morning was spent at my folks watching the Macy’s Thanksgiving Day parade and playing. The babies just loved the parade with the big balloons. Kermit and Big Bird were especially exciting. The music also instigated lots of dancing. It was so fun to watch.

In the afternoon, we joined our neighbor Jean and her family at her sister’s for thanksgiving. Jean’s entire family has been so good to us, and, as the grandparents of 3 girls under the age of 2, Jean’s sister’s house was already set up for little ones. Ours were the only little ones there and were quite busy but everyone seemed to take it in stride.

I can’t believe it’s November and Christmas will soon be upon us. I think this year the babies will really get it, and I know it will be tons of fun. They both have such funny personalities. Sophie is completely back to her normal self, and everyday we see improvements in her speech. On Wednesday I took her to her first speech therapy session in over a month and although Lisa was prepared for the worst, she was pleasantly surprised at her status given the severity of Sophie’s illness. Our focus over the next several months will be annunciation and building sentences. We’re also working on “ I want”, “please”, and “thank you”. We just have to continue to work at it and give our little girl all the support she needs.

The services Trent has received over the last 2 years have definitely worked, and we’ve been told by his speech therapist and his early interventionist that the probability of him being recommended for additional services beyond age 3 (when the our local school district takes over responsibility for services) is highly unlikely. Apparently a child needs to be at least 70% behind to receive services from their local school district. We are so proud of him and thrilled with his progress but worried about him being separated from his sister. They are so connected. He’s definitely aware that he’s the older brother. On Wednesday we took him for a haircut at the salon where I go. He was such a big boy. He sat in Sadie’s chair, without having to sit on anyone’s lap, and just looked around. There is lots of “personality” in the salon, and I think Trent was just transfixed by it all. Sophie sat close by and I think was concerned something was happening to him because she kept telling him it was ok- even though he wasn’t upset. Like I said- very, very connected. [[Image:the_kids/CoolKTK.JPG]]

It’s been a busy couple of days, albeit all good. On Saturday I took the babies to a birthday party for our neighbor, Gaby, across the street. Her folks are renting a home (due to be torn down after the 1st of the year) while their home is being remodeled. We just love them, and all the Nevada neighbors wish we could find a way to convince them to buy a house on our street and stay. The party was at a park in Los Gatos – one I’d spend a lot of time at as a kid. Lots of great kids and a ton of fun, but I’m not sure why I thought I had to look “cute” and wear slides. Did I not realize I’d be chasing my 2 1/2 year olds around a very nice playground? Why did I think cute shoes were important? Talk about a loser mommy moment. Thank goodness for Dan- Gaby’s dad. He was fabulous about chasing Trent while I went after Sophie. It was the first time since I’d had Sophie at a playground since she was sick, and I’m afraid is was a bit harder for me than I had thought it would be. As always she wanted to be her independent self but knew she needed help (and would ask) to climb on some of the very, very nice playground equipment. We always put a hat on her when she goes out but of course once she starts playing- it comes off. We’re so used now to how she looks and I guess I wasn’t prepared when a mother told her son to be careful of the little girl who was sick. I guess I didn’t realize people would think she had cancer. I know the mother was trying to let her son know to be aware of Sophie- but having someone think she was sick was hard to hear. Being the momma bear though- I just told her she had brain surgery but was fine.

On Saturday night we had a “Celebrating our friends” party for folks who helped us when Sophie was ill (the folks who provided meals, childcare, etc). What a great night! We had neighbors, family and friends from all places in our life, – including girlfriend from high school (who, being local, always represents my close high school friends in times of need). What a great time. We are so lucky and wanted to celebrate Sophie’s recovery. We just wish our friends who are in other parts of the country and world could’ve attended. Aaron’s mom made the most incredible feast and, of course, the Nevada Ave neighbors “just showed up” to help get ready and were right there to help clean up. There is something about doing dishes with a group of ladies. It’s always a blast.

Sophie and Trent so enjoyed having so many of our friends and neighbors. The neighbor kids all played in our driveway, and the adults just talked and ate. It was nice. Of course Sophie too did a little dancing. She just loves music and as soon as she heard the iPod- she was asking people to dance with her. We are so lucky to have so many great people in our life.

This week has been back to therapy schedules. On Monday, Sophie has her Early Intervention. She was bit tired on and off through the session but would have burst of energy. The docs had told us her fatigue from the infections could last for at least a month, but everyday we see improvement and know she will be totally back to baseline very, very soon. Today Trent had early intervention. Gayle, our amazing therapist, came with a plan to rake. We have so many leaves in our neighborhood and it made for a great activity. Unfortunately Sophie’s physical therapist was ill so Gayle had to accommodate having an extra person but, of course, just rolled with it. Our therapists have been extremely conscious of not exposing Sophie to any sort of illnesses (no matter how minor) given her recent health problems. We are very fortunate to have a services team who are so knowledgeable and understand how critical that she not be exposed to anything while she’s still recovering.

Today I also took them for their flu shots. Our pediatrician’s office was so happy to see them both healthy. The last time I was there I was running though their office with a very sick Sophie and the nurses and doctors who were there clearly remember it (one of the nurses even told me she hadn’t been that stressed since she worked in the NICU). Sophie cried and cried even before she got the shot, but Trent just bucked up. He was so good with his sister. He stood and watched as she got her shot and then at my urging – went over and hugged her and said “ You’ll be ok” after they both got their shots. He is such the big brother. [[Image:the_kids/TKSKOTB.JPG]] [[Image:the_kids/SKOTB.JPG]] [[Image:the_kids/BB1119.JPG]] [[Image:the_kids/SKB.JPG]]

Our Sophie girl seems totally back to normal. We are so happy. We had a day earlier this week where she gave us a scare – acting sleepy, running a fever, and vomiting but it seemed like just tummy issue and thankfully it passed in one day. We continue though to be hyper vigilant though and anything outside of normal is so scary.

Last night we had our neighborhood Thanksgiving. It’s a tradition that we started 3 years ago. It started with the intent that we would all try out recipes on each other before we tried them on our families for Thanksgiving but now it’s evolved to all of us bringing our favorite recipes, enjoying each other and watching the kids play. For the last two years Tia and hosted and this year was especially special. Her house burned 3 days after last year’s event and this was the first time we were all back together in her beautifully redone home. The adults all had a great time together but watching the kids was truly amazing. In spite of the darkness and cooler weather- nothing could stop them from playing. All ages (ours were the youngest up to 13) played a fabulous game of soccer. Charles, who is the oldest (Tia & Jose’s son) is such a special young man. He watches out for everyone and the babies just adore him as their unofficial big brother. It was so sweet to watch. We were especially blessed this year to have Grandma & Grandpa Keene join us. They’ve been with us since Sophie got sick and continue to be amazing. It’s so nice though- to be able to share our very special neighborhood traditions.

Tomorrow night we’re throwing a party to celebrate all the folks who helped us during Sophie’s illness. Grandma Judy has cooked herself silly today (she’s an amazing cook) in preparation for the party. I don’t know what we’d do without her. We can’t wait for people to see how well Sophie girl is doing. During the long days in October we talked about wanting to celebrate when things got better and we are so thankful that the day has come.

It’s hard to believe how quickly the babies are growing up. The time has come for us to start thinking about services for them when they age out of the Early Start program (age 3). I’ve now had the really direct conversation with all of our therapist about the future. They’ve been very clear with me that for a child to qualify for the next step in services (through out local school district) that the child has to be at least 70% developmentally behind. At first I thought it had to do with our local school district (who like many is way beyond stretched for funding) but apparently it’s a federal policy so… we probably have to think of a plan B. All our therapists have been very candid that there is no possible way Trent will schedule for further services. Should we feel he still needs Early Intervention or speech, it will definitely need to be something Aaron and I will use our private insure for. That’s what it’s for and we just want to make sure he has what he needs.

Sophie is more a question. She’s doing very well but is definitely behind. We’ve delayed her testing for her 6-month evaluation due to her illness need to figure out a plan for her. We just want to make sure she gets everything she needs in terms of services to catch up and move forward.

Today Sophie girl had physical therapy. Her therapist Karen was just thrilled with Sophie’s progress. She’s seeing her squat, run and focus – things that she’s seen very little of or not at all. I know every parent likes to see the best in their child but it sure is reassuring to have a professional confirm the progress. She’s forever been afraid of the giant ball (like the ones used in exercise classes) but now she’s much more comfortable. The one thing Sophie has always been aware of is her limitations and her stubbornness has played a major part in her being able o protect himself from things she’s not comfortable with- but now, we can see her confidence has improved and she’s willing to go outside her comfort zone.

The babies have both changed though over the past month and our long October has definitely left its mark. They’ve always been so independent and now they are both incredibly clinging. Aaron and I can’t even step outside without both of them melting down. I’m not sure if this behavior is just a “two thing” or if it’s related to the separation we went though in October. Trent continues to ask daily if papa “will come back” and often say’s the same when I leave. We need to regain his trust I suppose that no matter when Aaron and I are- we’ll always be here for both of them. [[Image:the_kids/SKH1.JPG]] [[Image:the_kids/TKB.JPG]] [[Image:the_kids/TKSKH.JPG]] [[Image:the_kids/TKSKB.JPG]]

Today I took Sophie for her post op with Dr. Edwards. What a great visit. He and Dr. Klaug were so happy to see her healthy. We had known that her condition in October was serious and that we almost lost her but I guess I didn’t realize how personally her medical team took her condition and their level of worry. Her scan on Friday showed her ventricles have completely normalized and her behavior today also demonstrated that. Except for her bald held- you’d never know there was an issue. She was so busy while we sat in the waiting room. What a long hour. We just round and round the square of the waiting room- trying to burn off energy. Once we got into the room I tried everything I knew to entertain her. I finally took at my iPhone and started to play disco. What ever works. Dr. Edwards just laughed when he came in and said somehow he knew the Donna Summer was coming from our room. He was so happy to see her healthy. He and Dr. Klaug just smiled from ear to ear, as did the nurse practioners. Dr. Edwards told me that the neuro team and infection disease are still arguing about her infection, how long she had it and how she got it. Once again my children push the bounds of what is typical. Then net was though that Dr. Edwards did tell me that he learned something and if he ever had another mother who keeps coming back and saying something is wrong- he will make sure to listen. I’m not sure how old he is but he told me he learned that with all his experience, this taught him something and things are not always what they seem. I think we’re all ready not to do October again. Assuming all goes well, we don’t need to see neuro again until February. Woohoo.

The weeks Sophie was gone in October seem to have left a permanent mark on Trent and every time we’ve taken Sophie to an appointment he thinks she’s going away again. Today once again feared she was going away and spent a great part of the afternoon asking when she was returning. It seems like it’s going to take a long while for him to forget.

After our appointment I brought Sophie back to Apple so I could work for a while. She’s been EXTREMELY clingy since her illness so it makes small things like going to the restroom a challenge. Thankfully my manager Lucy took it all in stride and when I said I had to run to restroom, Lucy just knew what to do when Sophie melted down and brought her to the restroom to show that I wasn’t faraway (Lucy’s got the touch with her mommy experience0. Hopefully, the independent streak both babies will return soon and they will finally stop fearing that Aaron and I are going away.

Our little ones have had a busy couple of days. On Friday Sophie girl resumed her physical therapy. Her therapist Karen who has a great deal of experience and was prepared for the worst was pleasantly surprised at Sophie’s status. I had spoken to her a few times during the month of October (hard to believe it’s been over a month since she’s had therapy) and I could tell from her voice that Karen was quite concerned when I said meningitis and peritonitis. Clearly she knew how serious things were. Sophie though made her smile on Friday. She’s still walking too much on her tippy toes and is uncomfortable with steps but is now able to run again and is VERY busy. We were scheduled to have our 6-month county assessment in November and we’ve all agreed that the whole thing should be delayed for at least a month. She just needs more time to recover and it’s too soon to get a true assessment of her deficits.

On Friday night Aaron and I took her for her follow up CT. The hospital had scheduled it at 8pm in hopes she would be tired. Hmm- well sort of. We put in her pjs and took her on up to the hospital. The techs in the CT lab at Packard are so special. I don’t recall meeting the tech we had on Friday night (although she said she remembers us) but she had notes from a tech that knows us telling her to manage it however mom and dad suggested, have mom climb on the table and have me sing. The note was written by Maria a tech that knows us very well and has helped us through the most critical of times. Sophie was so calm and in 10 minutes we were done – all with no sedation.

Tomorrow she has an appointment with Dr. Edwards for her surgical follow up and neuro evaluation. Given that we’ve haven’t heard anything since Friday night though- we’re sure the news will be good.

Trent is becoming such a little man. His speech is just incredible and he is so busy. They both have a ton of energy but Trent can play 24/7. He’s such a boy. Any ball- provides hours of entertainment. Yesterday Grandma Judy and I took them for walk and to the farmer’s market. Trent decided it was good idea to pitch a dead cell phone he was playing with under a car. We went on our way but then as soon as we walked by the car on our way home he started hollering about it. At first I tried to use the stock of my flowers to reach of the car (lame move) and at Grandma’s suggestion when into a coffee house to ask if I could use their broom to reach under the car. There I was- butt in the air crawling under the car. The man was on his phone in front of the coffee house and was giving whom ever he was talking to a blow by blow of my adventure. I’m so glad I could provide entertainment. Grandma Judy was smart and pretended she didn’t know me. Quite an event but I was able to retrieve the phone.

Grandma Judy and Grandpa Bobby continue to be a tremendous help. They’re just great about coming over, taking both kids and just spending time with their Grand children. Tomorrow I have a meeting I need to be at before 8am so Grandma is spending the night so I can leave early. The babies just adore their Grandparents and we are so lucky for this time with them.