May 2008

Tonight I had one of those “Oh my goodness” parent moments. All started well, but then… We were in our PJs reading and playing a bit, and then our neighbor Mark came over. We were just chatting and – in the blink of an eye – Trent was off and running down the street. Wow he is fast, fast, fast. I hollered at Mark to catch Sophie, off came my flip-flops and off I went running after him. Talk about a sprint. Thank goodness we are friends with the neighbors he ran to (he plays with their son). In he ran to their house. Thankfully, Jose was cool with it and just said “Hi Katie”. I was so embarrassed.

Our Sophie girl continues to have her up and downs. Yesterday was another hard day (lots of sleeping, crying etc), but today she was much better. We do have a game plan though. Thankfully the neuro team is sticking in there with us and trusting our judgment that something is up. We continue to check in and now have decided we’ll get her a full lab work up. The blood tests will at least tell us if she has a shift beyond normal and tell us if we need to look further (like a shunt tap). One step at time though…

Our up and downs with Sophie girl continue. She has some really good days (like last Friday and 1/2 of today) but then some really scary days like last Thursday, Saturday, and yesterday. I’ve been in constant touch with the neuro team, but it’s just a matter of watching her. On Thursday, the neuro team had me take her to the pediatrician just to rule out normal childhood things like strep and urinary infections. What an experience. Wearing white pants had sounded like a good idea in the morning, but I obviously didn’t think it through. Needless to say, after holding poor Sophie down to be examined, get the strep test, and get bag taped on her to collect her urine, my pants were covered with little footprints as she kicked me. As expected, all tests came back normal (our pediatrician totally knew they would), and for now we’re just back to watching her.

Trent on the other hand is completely BUSY, and it’s been hard to get him down for bed. He’d be playing outside 24/7 if he had his choice. On Friday night we had them in their pjs and nothing we could do would get them to sleep. Finally, we put on their crocs and took them both for a walk around the block. Unfortunately, Trent grabbed on to a large stick and went on to face plant on it. The bounced right back up but has the nastiest patch of road rash on his face. He also keeps telling folks that “papa did it” when asked. Aaron is beyond horrified.

We’ve had a terrible fire in the Santa Cruz Mountains and due to the heavy smoke and overall crappy weather have been keeping everyone in the house. We are especially worried about Trent given his chronic lung disease due to being on the vent for so long (although we’ve been told the lungs do repair themselves over time) ,but still we’ve not wanted to take any chances with the horrible ash air. Poor kid though, he doesn’t understand and just wants to go out and play.

Yesterday Tia left whistles on our porch and they provide hours and hours of fun. She is so sweet. She always knows just the thing to make a lousy day better.

Tonight we kicked off of annual Monday night dinners with a barbeque at Jean’s. Since last year we’ve added another set of twins and several other little ones. We had a ton of kids and they now outnumber the parents. Thank goodness it is light out so it’s easy to keep track of everyone. The new twins across the street are still getting used to everyone, but I’m hoping they can continue to play with Trent and Sophie and become friends. The weather was a bit cooler than we would’ve liked, but it still was a great way to kick off the summer.

Tomorrow I’ll do another check in with neuro and just hope that whatever is bothering our little Sophie passes quickly.

We continue to watch Sophie closely.  She continues to need a lot of sleep and lacks energy at times (not wanting to jump or run etc) but then other times she is just the bundle of energy.  We’re still trying to figure out a plan though. There is just no way we continue this day to day thing for months on end- waiting for an issue.  I was told last Friday that another shunt infection is highly unlikely but not totally impossible and now I’m wondering…. Do we get a blood test or tap her shunt now?  I just want to make sure she’s not in pain and can play.

Trent is such a big brother.  He can clearly tell his sister is not herself and is SO protective.  “Mama- Sophie is tired”, “Mama – please hold Sophie”.  It is so sweet.  No girl could’ve ever have asked for a better big brother.  She is so lucky.

The pictures attached are of the kids doing a “mama- demo”.  Trent is the chair doing the “Keene- I can sleep anywhere” and Sophie showing that all Keene women – carry way too much in their handbags….

[Show as slideshow]

The last couple of days at the Keene house have been all about learning (at least for me anyway). Last Thursday Aaron went away for a work offsite. One night I think, “How hard can this be?” I was so wrong. I was a complete and total dud as a single parent.

It all started with this incredible heat wave that took us to 100 degrees and, because I was cheap when we did our remodel 3 years ago, we don’t have air conditioning. There wasn’t much to do except keep the kids in the baby pool the whole day. Jenifer (Tia) had them in it in the morning, Emily did the same when she took over the afternoon shift, and I continued it when I got home in the late afternoon. We then went to play with the neighbor kids with my hope being that I could completely wear them out and they would completely crash. Unfortunately the heat just seemed too much for Sophie and not only would she not sleep, she cried hysterically from 9:30pm until 4am straight without stopping. I was just beside myself. She never does that and my one night alone, I flopped. Of course all our windows were open since it was so hot, and I kept moving her around the house hoping we wouldn’t wake up the neighbors. Finally at 3am the phone rang it was Tia telling me she could hear Sophie and was coming over. Poor Sophie had herself so worked up and was now running a fever. Jenifer, always the calm one, just got a cool washcloth and tried to calm her. Finally after what seemed like an hour, we were finally able to get her to go to sleep on my lap. Oh Friday morning came all too soon, and I was most joyous when Jenifer came back at 8am with mocha for me.

Trent, thankfully, slept through the whole thing. Sophie continued not to be herself most of the day, and finally I called the neuro team. After describing her symptoms, they asked me to bring her up to the emergency room for a check. Dr. Edwards was due to leave town for a conference and decided he didn’t want us going into a weekend without him –- if there was indeed an issue. Sophie continued to scream while we were there but seemed to get better one she cooled down. Her shunt was also checked (they pump it and check how quickly it refills) and it, too, seemed fine. However, her balance wasn’t great and she was clearly upset, so they decided to give her a CT scan. Thankfully after much drama, in which she had a scan but was taken off the table because she wouldn’t stay still and I was told she would have to be rescanned, Dr. Edwards came down and looked at the original scan and said her ventricles showed no change from last November. WOOHOO. No Shunt failure. So we think there could be a couple of things going on. She could be coming down with something (although not likely). There might be something going on with her shunt. Or, most likely, she lacks the ability to cool herself. Apparently that issue, like her difficulty adjusting to attitude, is fairly common in children with hydrocephalus. So we got to come home and were told just to watch her carefully. I’m to call the neuro folks on Monday just to check in.

The neighbors had planned to get together too (too hot to cook night) and at first just Trent and I went, but Sophie got so upset that Aaron brought her down so she could play, too. Laurel and Mark provided water balloons and all had a grand time. The kids just adore all the neighbor kids and being outside with everyone is clearly the highlight of their day. Thankfully, Sophie seemed almost herself, and the entire family got sleep on Friday night.

Yesterday, Aunt Liz and Uncle Randy came to visit and brought the babies a giant box. They didn’t quite understand it and seemed much more interested in getting ice cream with Aunt Liz and Uncle Randy but finally got it last night and played for hours. Uncle Randy is so smart. He knew that the box would be just the ticket. Needless to say, today the box has continued to be a hit.

[Show as slideshow]

The stars seem to be aligning to support our long tried-for, very much-desired goal to have potty-trained 3-year-olds. First, the diaper genie met its maker on Monday (the lid broke off and off it went to the trash), and then we totally ran out of diapers yesterday and I didn’t realize it until late into the evening, so we were sans supplies this morning. Doris (our wonderful caregiver), who has long wanted this, decided now was the time, so the Trentman has been sans diaper most of the day. He’s doing well, but there have been a few accidents and, needless to say, we’re more than thrilled that we have hardwood floors. In addition, the weather is hot so their minimal clothes helped. However, the throw rugs in the kids bathroom have fallen victim to not “quite” making it today and ended up bonding with the washing machine. At least we’re trying though. Sophie is trying, too, but seems a bit behind Trent. Early on there were some concerns from her urologist that she may have issues due to her hydrocephalus, and it’s just one of those things we won’t know until she tries. (It’s something about pressure and ability to know when her bladder is full). There’s really no test though other than putting the pedal to the medal and going for the “big girl moment”. It seems so simple and yet just another thing we pray for just to “work”.  

[Show as slideshow]

It’s funny how toddlers make you do things, even when you don’t expect to. Yesterday, Aaron went to the Giant’s game with our neighbor after we did the farmers market, and I took my step mom and dad out for Mother’s Day.  Thankfully they chose a “family type” restaurant and, even though it was hard to keep the kids in check, I do think my parents can go back to the restaurant again. Thankfully they chose a “kid friendly” restaurant though so we were in good company.  Sophie did force me to accept that the seasons had changed and update my wardrobe.  Several weeks ago I had bought my “Spring hand bag” but hadn’t gotten the chance to switch to it.  However, after Sophie lost control of the cup of apple juice we gave her at the restaurant and spilled it all on my purse, I realized it was just her way of telling me that I needed to get with the season and change my handbag. Whatever works, I suppose.

Today we celebrated mothers day by going to Tia’s restaurant (there is really no mother’s day without Tia), napping (Sophie hasn’t really slept in the last two days so she and I really needed a nap), Trent gardening with Papa, and a nice bike ride to the playground. All and all the perfect day. Brunch was so nice. The babies were so good and were thrilled to see Tia and her colleagues (that they’ve met over the last couple of years at meetings and such).  In addition, the buffet was completely a dream come true for both babies. Sophie because she could just eat and eat. Trent because it had all his favorite things

I’m not sure why Sophie’s not sleeping, but I’m keeping my fingers crossed it was just a two day fluke. I must be getting old. In the past I could do two 2-hour nights, but today I was just a cranky idiot. Trent, on the other hand, is the happy sleeper. I think he knows he needs his sleep so he can play. All he wants to do is play outside, throw balls, and be a boy. 

It looks like very hot weather is coming our way, so it may be time to get out the plastic pool. Aaron is out of town this week for a work offsite so it will be me alone.  Not a big deal (I’m already trying to figure out our plan), but since Aaron has changed jobs, all three of us have been incredibly spoiled by having him around and it’s just hard not to have him there. However, having him out of town will just make all three of us look forward to next Friday so we can be a family again. 

Another busy week for the Keene family.   The month seems to be flying by and I can’t believe it’s already May.  Geez- where did the year go?  It’s all about eating and potty training in the Keene household.  I know Trent and Sophie are growing but it’s hard not to freak out to know that they’re 3 and yet still wearing 18-24 month size.  I know we started out at a 6 lbs_+ /3 .5 month deficit but sometimes it seems like we with never catch up.  Trent is growing but not the eater we wish and Sophie is the eater but yet her growth is slower. I also don’t’ think I’ll ever get used to feeling the tube that runs from her head, down her throat and through her abdomen.  Her small stature makes it much more pronounced and just makes the Mama’s heart ache.

In spite of the growth worries- they both are doing exceptionally well.  Trent is so articulate and so wants to be a big boy.  He constantly tells us he needs “big boy underwear” so he can go to school.  It’s about being like Charles- our next-door neighbor (and Trent’s unofficial big brother) Trent watches Charles go to school and therefore Trent wants to too.  Whatever works- just as long as we end the diaper era.

Sophie too is trying with potty training but it’s been a bit harder. We’ve been told that there may be some issues related to her hydrocephalus (something related to urology and her organs understanding control) but we won’t know if we have an issue until she’s potty trained.  I know hydrocephalus effects the brain- I guess I never realized the complete impact until you realize how much the various parts of the brain are involved in EVERYTHING> She is trying thought.  She’s picked up this odd thing though where she asks for the newspaper when we sit her on the pot.   Hmm ok.  So to put it bluntly- the newspaper has never been involved in that particular part of the house for Aaron or I so were not sure where she’s getting it.  And oh by the way- it hasn’t helped.  She just holds it but hasn’t delivered…… At least she’s catching up on her current events.