July 2006

Today the pediatrician called to check on our Sophie girls sleeping and I shared that try and we might- she cannot sleep in her crib.  Our pediatrician is a very non emotional but said given Sophie’s shunt, she recommended I call Stanford and push to move her CT scan up.   I asked if this was normal baby and she finally said yes babies have all sorts of different behaviors but refusing to lie down isn’t one of them.  How I wish Sophie could just say, “mommy my head hurts when I lie down so I prefer my swing”.  I guess I have to wait a few years for that.  The doctor reminded me that sleeping upright in a swing is not a huge deal and that thousands of middle aged men do just that in their recliners but somehow that didn’t relieve me and 13 months (corrected) is really much too young to get the “recliner” habit going.  We’ve been able to move our CT scan to this Friday but our hope is they can even pull it in sooner so we can get it in before Thursday’s neuro clinic.  I never thought I’d have my neurosurgeons schedule in my daytimer.  Hopefully we’ll get out scan it will be NORMAL and then it will just be something like she doesn’t like the color of her sheets or her brother makes inappropriate sounds (as some men tend to do) at night and so she can’t sleep in the same room.

How can I have to babies who are so different?  Trent is Mr. Happy to sleep anytime but Sophie- a whole different person.  Tonight we had our weekly street dinner and Trent’s whole face just lit up when he saw our neighbor (and his god father) Jose.  Wow.  He was so happy to see him and just snuggled right up to him when he was holding him.  It just warmed my heart to know that both our babies have so many people that care for them.

My bout of avoidance continues and I have yet to be able to open the speech therapists and nephology write ups. I’ve promised myself tomorrow I will ready all 3 (Trent and Sophie each have one from the nephrology clinic) but for today I still just couldn’t do it. I think I’m suffering from information overload (or parent worry overload) I’m not sure which. In spite of it all, they both continue to amazes us everyday. The both have these big rubber balls that our friend Jamie gave us and we noticed today that Trent knows how to catch when we throw the ball and understands when we play catch. It sounds like such a small thing but he loves it and we were thrilled. Sophie is definitely our social child and is making it a point to say “hi” to every person she sees – everywhere. She’s also the more adventurous one and tends to pull him along.

Today we were watching her try to crawl out under our disappearing screen that covers our back door and both Aaron and I wondered if getting that installed (which we did in the last month) was a smart move with such curious little ones. The kicker is she knows that she’s not suppose to do it and when I saw her butt up trying to stick her head under the screen and pet the dog, all I had to say was “Sophie Louise” and she immediately tried to sit up and pretend she was just causally sitting there. A glimpse into our future I suppose.

Our little man continues to get more and more verbal everyday. I wish I knew exactly what was normal and what wasn’t. His saying “No” and “mama” and “doggie” sounds great to me. We’ll keep working at it though. Our focus next week is to get Sophie BACK into her crib (she’s sleeping in the swing again as I type), trying to take our first steps, and expanding Trent’s verbal skills.

[[Image:the_kids/IMG_0001.JPG]]

Today we took the babies on the Light Rail to the San Jose Grand Prix to watch the pre qualifying races (ears protected of course).  What an unpleasant surprise it was when they told us strollers were not permitted.  Undeterred we each took a baby and went on to watch the races.  Sophie seemed much more into watching the cars while Trent was more interested in watching the sights and sounds around us.  Such a new thing for both of them they were unsure what to make of it all.  In addition to their first races, the day also included the baby’s first rock concert, which we stumbled across at the Discovery Meadow (ears still protected) with David Lee Roth (formerly of Van Halen).  Sophie a big fan of the 70s and 80s music was rocking out.  Trent seemed more interested in the people-perhaps the scantily glad women- we’re not sure.  They were a bit young for it all but it was still something nice to do as a family.

Sophie unfortunately spent the night (again) in her swing.  She went about 45 minutes in her crib- standing up screaming and we finally gave up and put her in the swing.  I know every parent go through this but I wish I knew what was causing this and if there is no cause, why our baby who used to sleep so soundly, just one day started hating lying down and her crib.

Tonight we were watching the babies chase each other around the house.  Trent just LOVES to be tickeled and has the biggest belly laugh.  Sophie just smiles but doesn’t seem to be ticklish.  They both just crack us up!

Tonight we are trying Sophie girl back in her crib and have made a pack with each other that no matter how much she cries, we will not pick her up and put her in the swing. I know every parent goes through this but it is SO painful. I’m just watching the clock and listening to her scream and it’s breaking my heart (we have Trent in another room). We’ve just got to get her back in her crib and this seems to be the only way.

We continue to work on our crawling and walking. Our caregiver Doris got Trent kneepads and he’s SO happy. His knees were getting so calloused but now they are protected. Every day he seems a bit closer to walking. Today we noticed he’s now trying to stand on one leg (yet again the flying leg stance) and we just know walking is just days (hopefully) away. He still does the Mr. T stance (arms straight out in what the therapist calls the T stance) whenever he’s doing something new that’s hard but everyday we notice his arms get a little more relaxed as he masters the skill and eventually when he totally gets it, his arms go down to his side.

Sophie girl too is trying but is less steady on her feet. However what she lacks in strength she is certainly making up for in determination.

Today we received yet more paper work from Stanford on a dr. visit the babies had early this year (they send a copy to us as well as the pediatrician). I have decided though for the next 3 days I am taking a break from all of it and will just have a big reading party next week when my mind is more ready for it all.
PS. Aaron caved 15 minutes into our pact of ” make Sophie sleep in the crib” and picked her up. We’ll try again tomorrow.
[[Image:the_kids/Busy1.JPG]][[Image:the_kids/Busy2.JPG]]

We’re so glad the weather has cooled.  Tonight we took the babies to “ Music in the Glen” put on by the Kiwanis club.  For several Thursday nights during the summer a band comes and plays at our local elementary school field and people are able to picnic and enjoy the music.  The baby’s just love the music and it’s so nice to be able to dance around with them and have a picnic as a family.  We’re also in good company- it’s a total family event with tons of kids, families and strollers.  The speech therapist report arrived in the mail today along with approval from early start for speech therapy.  I started to ready through the report and after reading “DELAYED” next to several age expectations, I decided I wasn’t ready to read the document today and folded it up for now and put it back in the envelope.  My plan is to read it this weekend when it doesn’t seem so overwhelming.  I think I’m just on information overload from this week.
Tonight when I drove up I was reminded how truly blessed we are though.  There they both were standing up against our big front window just waving and smiling at me. What a great thing to come home to. It just made me smile from ear to ear.
Our Sophie girl continues to struggle with sleeping.  She’s still in her swing and nothing we’ve tried has been able to get her back into her crib.  I wish I knew what the answer was.

Well we’re now at 3 of 3 for the babies appointments this week.  Last year this seemed so much easier but everyday this week has felt like I was planning a strategic manuver to get organized, get out the door, arrange for alternate childcare since ourWell we’re now at 3 of 3 for the baby’s appointments this week.  Last year this seemed so much easier but everyday this week has felt like I was planning a strategic maneuver to get organized, get out the door, arrange for alternate childcare since our schedule was off and try to keep my professional commitments.  Thankfully I’ve had a ton of help from my folks, my wonderful neighbors and amazing colleagues.  Today Sophie girl and I were out of the house at 7am to make our am appointment at Stanford- requiring our neighbor Jean to come over for an house to hang with the Trentman for an hour until our regular caregiver arrived.  What I wouldn’t do for a drive thru starbucks in my traffic pattern.  So ugly for a person like me who likes a mocha everyday but hasn’t been getting any coffee until 12pm this week.

Sophie was so brave today.  Somehow I was under the impression today’s test was a kidney function test and I was totally wrong.  The test Sophie had today was a urodynamic test to measure the function and effectiveness of her bladder.  When I asked the doctor how this was related to her kidneys and the nephrology team, he reminded me that the urology people are in charge of the ” plumbing” – hence the focus on the bladder.  Apparently people with neurological issues (like hydrocephalus) often have issues with pressure- one of those being reflux of the bladder- where urine can flow backwards up into the kidneys causing UTIs.   For the last year Sophie has been on antibiotics to prevent UTIs- and so far we haven’t had any.

The test required a catheter to be placed in Sophie’s urethra and in her rectum with fluid being shot into her bladder to take picture of the release by her bladder.  Although it wasn’t suppose to be painful, clearly it was and she just screamed and screamed.  It was sooo hard for me to hold her with her looking into eyes pleating for it to stop.  Apparently the large amount of fluid and her desire to get it out causes cramping which can be quite painful.   It was also hard for me to see pictures of all the tubing in her belly (looked like spaghetti) for her shunt.  For some reason in my head I always had it in my mind as a neat little roll and was under the impression that it was just unroll little by little as she grew.  I was so unprepared for it to be strewn all over abdominal region.  Fortunately the discomfort was able to be removed once they used a syringe to remove the fluid from the catheter and it was almost as if Sophie gave us a sigh of relief as the discomfort subsided and was immediately back to her normal self.

As hard as the test was, the results were quite good- showing no reflux. Woohoo. This weekend we can discontinue the antibiotics and moving forward will only need to see urology once a year (after the follow up doctor visit for this test).

Being the trooper she was, Sophie went on to hang out for two hours at Apple after her test – hanging out with some colleagues while I was in a meeting.  They were so great with her – passing her between 3 of my colleagues and her playing in their offices with her blocks.  Having their help made the day so much easier.

Hopefully both babies will sleep well tonight after this long week.

Day 2 of our appointment week.  Today Trent had a follow hearing test with the audiology department at Stanford. Pretty easy tests where they manage the response from Trent’s eardrums and watch his facial expression while he has electrodes in his ear.  The results were good news bad news.  The GREAT news is that his hearing appears to be NORMAL.  I say appears because according to the audiologist due the amount of fluid he has had in the past, it can change on a daily basis.  The bad news is that both the audiologist and speech therapist believe his speech is delay and now the cause of hearing loss can be ruled out as the cause.  While both the audiologist and our physical therapist were happy that the hearing test came out normal today, they both said that the result were bittersweet know the challenges he is still facing.

Its hard not to have a pity party and feel horrible for our babies with the challenges that we have given them.  It seems so selfish on our part as parents to have signed them up for so many challenges that they didn’t agree to.