July 2007

It’s been a busy couple of days. Yesterday I had thought Sophie girl had her follow up with Dr. Edwards (or a least that is what the scheduler told me on Friday) but unfortunately we didn’t. Aaron took her up there and I met them there. It was funny. I was looking around the very, very crowded waiting room at the clinic and I heard this very familiar “hi Mama” and there was my little Sophie girl sitting on Aaron’s lap. After quite a discussion with the admin person they told me our appointment was really for next Monday and should we want to see Dr. Edwards since we were there- he was running 1 1/2 behind and there were 10 people in front of us. Having been the family that has caused the delays, we immediately got it and agreed to return next Monday. Actually it all works out better I suppose. Hopefully (fingers crossed) Dr. Edwards will be running on time and if not I can manage my schedule accordingly and Sophie can come hand out with me at work. The hard part about this we were so anxious to hear the results from our recent CT scan. Every part of me though is watching Sophie (who has been her total Sophie self this last week) and knowing that the neuro team would’ve called me if there had been something to say. Still, Monday can’t come soon enough.

Today we had Sophie’s home physical therapist visit and Trent’s early intervention therapy. I am so glad we changed Sophie therapy plan. She is doing so well with Karen and both therapist completely work together. It’s really quite something to be a part of. Today Karen I tried to work with Sophie and her balance. We put the couch pillows on the ground and worked on having her step form pillow to pillow. It’s all about balance. The other activities include play-doh and a blanket swing. The play-doh went great but the blanket swing caused GREAT anxiety (each of us held a corner and swung her) and we quickly ended. I’m not sure if it’s left over fear from her clinic days or just over all fear but whatever- she was scared and we stopped very quickly.

Trent just LOVES Gayle – his early intervention therapist. She always comes with an activity plan and today’s activity was about making a volcano with baking soda and vinegar. He had a blast and could almost say “vinegar”. How far he’s come. He’s such a sweet, sweet little man. Definitely my hugger and cuddler.

Both babies are so in love with all our neighbors and Gaby the little girl across the street. Big hugs every time they see her. We are so bummed they are just short time renters as their house is being remodeled. We so want to keep the, I understand from her parent that the love fest goes both ways and of couse all three don’t understand this relationship is just a short term thing related to temporary
circumstances.
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The babies have had a busy weekend.  The running is hard but it also reminds us how far they’ve come, and we’d so much rather Sophie be “busy” than be just wanting to lie around.  Yesterday we threw a 70th birthday party for Grandma Carol.  Sophie made quite a to do about picking out a particular dress fit for a “party”.  The babies have this incredible social network that dwarfs anything and I would ever dream of and, of course, it comes with lots of birthday parties.  Needless to say, you mention the word “birthday” and both ask about “cake”, ”balloons,” and “presents”. I think they understood it was Grandma’s birthday, but I’m sure they didn’t get the significance of 70.  It was so nice to be able to have them play in front of my parent’s friends and spend time with their Aunt Liz and Uncle Randy though.  Very sweet.

Today was just a recovering day with a visit to the park, a long walk, and an afternoon in the pool.  The perfect way to spend a Sunday.

Tomorrow Sophie goes back to Packard for an examination with Dr. Edwards and to hear the outcome of last week’s CT scan. Right now we’re taking no news as good news. Thank goodness for our long-term relationship with Dr. Edwards.  I just know he would’ve called us if there had been anything to say and tomorrow will just be a “all looks good-see you in 6 months.  So many doctors though-it can get hard.  It all seemed so easy until we had to add Dr. Olsen to manage the epilepsy.  Somehow that was the point that pushed me over the edge.  I’m not sure if it’s the concept of a forever condition, the social view of epilepsy (whether it’s real or imagined), or the VERY academic doctor…. Somehow together it’s become this incredible mountain for me.  In fact the mountain has gotten so tall that I’ve contacted the organization Parents helping Parents.  I know I’m out of my league and I know I need help with others who have much more expertise than I to give me the tools I need to support Sophie 150%.

I think Trent knows too, though, that we’re worried about Sophie and being the awesome big brother he is – he has stepped up.  Mr. Chatty and so very protective of his sister.  Seeing them together just warms our hearts.

I’ve heard that it takes a village to raise children, and, over the last two days, I don’t think it’s been more personally true for me than the last two days.

Yesterday was just a lot. The day started with me having to have my butt in a seat at a hotel @ 8:30am for a meeting.  Right on cue, our caregiver Doris showed early helping me get everyone dressed, in their high chairs, and breakfast going. Thank goodness for Doris.  Once we got going I gave her the run down of appointments.  Sophie’s neurologist appointment at 1pm @ Stanford and Trent’s speech appointment at 5pm.  Even Doris, who is the ever-present mellow person, told me she thought is was a busy day. Sophie’s neurologist appointment went well. The clinic was on time (woohoo) and Sophie weighed in at 24lbs 4 oz. 25lbs is the next big goal for the babies.  Our neurologist Dr. Olsen is very good but very academic. We talked about what we think is seizures but Dr. Olsen is hesitant to run towards medication changes until we have more evidence or a significant problem. It’s a concerning approach for me but for now something we’ll go with.  However, we do have a plan. Should we see more symptoms, our plan is to have Sophie girl wear an EEG monitor for 24 hours to measure her brain waves and look for seizure activity.  Following the study, we would then contemplate a med change. For now though, we’ll just observe.  Thankfully Aaron was able to meet me at the appointment and then we traded cars.  He took Sophie home, and I went back to work.  At the end of the day, I came home and picked up Trent for speech.  He did SO well. His therapist Lisa was so thrilled with his progress. Three and four word sentences.  He’s really making progress.

Our rough Wednesday went into an early Thursday.  On Thursday am (today) Sophie had her annual CT exam.  Knowing it would be tough and I’d need reinforcements, I had asked my girlfriend Becky to stay the night and accompany Sophie and me to her 6:30am appointment at Packard.  We were so lucky to have Becky with us.  She was absolutely amazing.  Tia always coming through was totally fine with Trent coming over to her house at 6:00am and putting him into bed with her son Charles.  I know Trent was mad to be woken so early but loved being able to hang out with Charles.
The hospital had wanted to sedate Sophie and that was something I really didn’t want.  Of course just as I was trying to convince them that Sophie would lie still- she was dancing around in her crib in front of the anesthesiologist.  What a tough sell.  The docs went with it though and agreed just to give Sophie a baby valum just to relax her.  Thank goodness for Aunt Becky who walked around with Sophie in the PACU (the pre procedure ward) while I answered questions and filled out paperwork.  Thankfully the technician in the CT lab was the wonderful lady who allows parents to lie on the table with babies and talk them through the procedure.  I jumped on the table and Becky was in charge of distraction. Lots of singing, Sophie taped down and spinning toy but overall she did well.  The odd thing was that the test went longer and afterwards the technician came in to ask me when our follow up with neuro was and asked if I had any concerns.  I then explained Sophie’s recent sleepiness, balance issues, and overall non-Sophie like behavior.  I’m not sure if it was what I said – but they then paged the neuro team and asked us to meet us upstairs. I was so freaked out.  In the end, the radiologist said the scan was “stable” and her neuro exam by the neuro nurse practioners was normal, but we’re still watching her closely.  Summer, the nurse practioner who works for Dr. Edwards, reminded me that we know our babies best and that they’ve been down this road with us before – where all looks normal but Sophie isn’t Sophie and eventually things go south.

Hopefully Dr. Edwards will review the film tonight and give us the official reading tomorrow.

Sophie definitely didn’t react well to the relaxing meds though. She cried all the way home from Packard and then went on to SCREAM for almost 2 hours after I got home.  Tia, Charles, and I were almost beside ourselves trying to figure out what to do to make her happy.  Like I said, it takes a village.

We are praying for sleep tonight.  It’s been a long couple of days.

It’s been a tough couple of days for our little Sophie. On Saturday Aaron’s uncles came for a visit. Our grand plan was to all go out to the lunch but unfortunately the babies were pretty cranky and Sophie wasn’t feeling herself so we just hung out. Sophie is worrying us quite a bit. She just cries and cries and wants to be held. Uncle Jack and Uncle Harvey were good sports about it though and just rolled with their crankiness.

I can’t wait until Sophie can really communicate and tell us what she’s feeling. We asked her and asked her and finally tried in Spanish. Thank goodness our neighbors our fluent and I just call them and ask how to say in Spanish “does your head hurt?” Unfortunately even being asked in Spanish- she couldn’t really answer. It is so odd. She wants to play so much and will do so when she’s with other children (like at the park on Sunday or at our street dinner last night) but then runs out of steam quickly. Last night they were so cute with the other toddlers at the street dinner. They all just played together and Gaby the little girl across the street went right up to Sophie and said “huggy” and they had a big moment of hugging. They talk about each other all the time and just LOVE Monday nights.
The up and downs continue though-we just never know. Mornings are tough too. She just wants to lie in her crib and is SO quiet when she gets up.

Tomorrow we will take Sophie to Stanford to be evaluated by her neurologist. We are quite hopeful the issues she is having now are related to her meds. Perhaps she’s grown out of her prescription or something. Whatever the case- it’s no longer controlling her seizures and we have to get them stopped. They’re not horrible and are not consistent but it’s every hard to see Sophie tired all the time and not wanting to play.

Trent is working so hard on his talking. I can’t wait for his speech therapist to see him tomorrow. I just know she’s going to be thrilled (we certainly are). He is trying to hard to speak sentences. He’s on new meds for his reflux and we’re hopeful they’ll kick in soon (the doctors said it would take about 5 days to get into his system and we’re almost there now) this is the first time he’s been on a pill medication. He is still unsure about it though. He takes it but kind of makes a face. I do think though it makes him feel better. He still is gagging and has a raspy voice but everyday it gets a little better.

They continue to do amazing work with their early intervention therapist. She sent me the following email last night. We are proud of them both.

“Just to let you know, I was able to see how much Sophie loves to move her body. She was totally laughing and giggling with joy today as we stood facing each other jumping up and down together on the rug. Then again in the bedroom she moved her waist from side to side holding on to her crib bars as music was playing. She has a great laugh.

After about 30ish minutes she started to rub her eyes and suck her thumb on occasion…slowing down a bit.

Oh and she spontaneously walked over to her brother and gave him a big hug, such a caring gesture. Your kids demonstrate such affection and caring.

Also, practiced taking turns and asking them to use words such as “can I play” or “wait” trying to encourage that they ask and respond v.s. grabbing. This will take time and repetition. “

The babies have had a busy week.  Yesterday I took Trent with me to work in the morning so we could leave from Apple (which is half way to Stanford) rather than coming back home to pick him up.  He was so good.   I was explaining to him that he was going to work with me and for the first time, he picked out his clothes on his own.  Granted it wasn’t a great fashion discussion and didn’t go beyond “ Mama, I want these pants and that shirt” but it’s definitely a start.  As long as they’re sentences- I don’t care.
I packed a big bag and toys and off we went.  I looked so silly coming in from the Apple parking lot.  I was carrying my purse, briefcase, the toy bag, the diaper bag and Trent.   I reminded myself of one of those glamour don’t photos- with women who carrying to many bags.  Anyway, he was an angle in my office.   Although I’d brought the toy bag, he of course was more intrigued by everything else (my mouse, things I have lying on my desk that make good toys, my printer etc) but once he was done exploring he just sat down on the ground and played with his blocks and trucks.
The GI visit went well.  I was disappointed with his weight though.  We had hit 25lbs the last time he was at the doctor (a couple of months ago) and yesterday he weighed in at 24lbx 9oz.  I was so disappointed that I asked him to be weighed again. Nope- 24lbs 90z it stayed.  The doctor though did tell me that the reflux was probably the cause of the weigh drop and now that we’ve changed his meds- she believed he would gain it back, Apparently the restart of the reflux was caused by a bug he had a few weeks back.  I hadn’t realized that a bug could restart it but the doctor said it’s pretty common in kids.
Our new plan is to try a different set of meds.  He’ll be on sort of mixed cocktail for the next 2-3 days and then move on to a completely new drug.  Our plan is to get him off the Reglan (which can have neurological side effects) and change him to a med that has a stronger acid blocker.  The plan is to keep him on the drugs for 3 months and hope that solves things.  If not, he’ll be worked up with a PHP probe (where a microscopic camera is stuck down his throat to see how he swallows and some other tests to get a better understanding of what’s happening.  The good news is while surgery still could be out there – it is really a last resort.  We also know now what to look for.  Spitting up food and whispering.  Both of these things had been happening and we weren’t sure what it was all about.  Now we know it means he’s in pain.  Going back to Packard though and seeing all the other children in the clinic did remind me though how far we’ve come.  It was GI day so just about every child had a NG tube.   We are so so fortunate those days are long gone for us.
Last night we took the babies to “Music in the Glen” which is an annual summer concert series at our local elementary school.  It’s most the under 10 crowd (with adults) and sea of strollers- but a very nice way to enjoy the summer evenings.    The babies just danced and danced to rock band that played mostly 70s and 80s music (right up our ally).   It’s something Aaron and I look forward to every summer and this year is especially fun with our 2 year olds.
Sophie girl has a big week next week.   She has her standard early intervention therapy on Monday but then will go to Stanford on Wednesday to see neurology (to reassess her seizures) and back on Thursday morning for her annual CT exam.  The seizures have changed somewhat.  Sometimes there great shaking but more often she just gets a blank look on her face and she won’t respond to her name, The doctor has assured me that these won’t cause any permanent damage unless they go on for hours but they are still quite scary.

Trent is doing so much better back on the reflux meds.  So much happier, laughing again and eating too.  We are SO happy.  Today he had early intervention therapy.  He did so well.  Gayle always comes with activities planned.  She is so incredibility awesome.They started with blocks and then went on to playing with cars outside in the blue tape track Gayle set up.  Trent also demoed how great he is at playing ball with the tee Aaron bought him.
Sophie on the other hand a harder day.  She woke up totally cranky from her morning nap and went on to be cranky through her physical therapy session.  For all the drama, it turned out she was hungry and once Tia gave her yogurt she was a new women.  Thankfully Karen her physical therapist ever the professional was able to respond quickly with Sophie’s ongoing meltdown and turned lunch into the therapy.
It’s not to feel overwhelmed by the uncontrolled seizures.  Thank goodness for the ability to cry in my car. Yesterday I had one of those moments (in my car) where I thought about how much she’s been through and how unfair all of this is to her.  I had the “buck up” conversation with myself and I’m doing my best (as is Aaron) but it’s still hard.  We have our fingers crossed that Packard can get us in this week (I fear it’s going to be one of those “we have a cancellation and you have to come now things” but we’ll do whatever it takes to get her meds adjusted and the seizures to stop.

At last we understand what’s happening to our little Sophie. After much evaluation and observation, we’ve determined that she’s having breakthrough seizures.  They started out an extremely mild early last week (so mild they just presented like fatigue) and by the end of the week were much more pronounced.  Aaron and I had a feeling the seizures had returned but it wasn’t until today when I spoke to Doris our caregiver that I figured out what was going on.  It turns out that Sophie had a seizure in front of her last Friday at the park.  I’m quite sure had I know she was having full blown seizures I would’ve gotten right back on a plane and come home.  This is all very scary but at least we know what was making her act sick.

We now need to have her examined by the neurologist and have her meds adjusted.  The nurse practioner I spoke to today told me this was not unexpected.  Apparently seizure activity can increase as a child grows (especially during rapid growth) and it’s just a matter of getting the right meds.  We’re now on the schedule for next week but the nurse practioner has told me she will do everything she can to get us into see Dr. Olson later this week.

In spite of all this, watching the babies play in the most amazing thing.  Tonight we had our weekly street dinner and it was just like a toddler fest.  There must have been 6 toddlers’ there within a year of each other.  Sophie has a special relationship with our neighbor Gaby across the street and Michael down the way.  She talks about both of them all the time and greets them both with a big hug.  Trent on the other hand wants to be with the big kids and is practically glued to Charles (whom he calls Georgie) side. They Tia, Jose and Charles but we can tell Trent looks up to him like a big brother.