This week has been the festival of doctor’s appointments for Sophie and at long last some good news.

The early part of the week started with Sophie’s yearly CT scan.  She’s had probably close of 100 of these over the course of her life but as she gets older, it definitely is getting harder.  She was just beside herself when we told her she had to go to the doctor – screaming at Aaron the whole way to my office where he was to drop her off so I could take her.  Once we traded her out in my parking lot though for the ride up to Packard with me- she calmed down… until she figured out where we were going.   She’s so on to us now.  The moment she saw “Welch Rd” where most of doctors are located- she started to scream again.  And off we went for her annual CT.

She was clearly familiar with the section of the hospital (and not very happy with me) but all that changed when we walked in and the technician told her that she was famous and Maria (another technician who has known her for 4 years and been through it all with us) had left her a gift of a big stuffed dog with a sweet note.   I was so touched and it made the study 100% easier.  The technician told me that Marie had said to follow my lead and she was all for it.  Why I thought it was a good idea to where a fitted dress on a day when I needed to jump on the CT table – I’ll never know.   Oh well.  There are worse things.

So we wrapped up Sophie and in blanket, I laid down on her and held her chin- and off we went in and out of the tube. She was definitely scared but the technicians kept talking to her through the microphone and told her to close her eyes and think of her favorite people.  Sophie said she’d think about Grand pa Bobby and Mamaw and before we knew it – the scan was over.

The following day we were back up at Packard for her two-week check in with rheumatology and then 2 hours later- neurosurgery.  The last two weeks of managing her arthritis has been difficult with all the meds (especially the biweekly shots) but at long last – she seems to be feeling more herself.   Her exam with rheumatology also showed that her inflammation is getting under control and now we will start to taper her off the prednisone.  Good thing too- she continues to eat us out of house and home and has put on 3lbs in 2 weeks.  Not a lot for most people but for a 30lb child- that is quite a gain.  We now are going a month out between appointments.  We’ll continue to decrease the prednisone but will continue the other 3 drugs – including the shots.   I know it kills Aaron and give them to her (and me to hold her down) but she needs it and we just have to deal.

Between appointments I took her over to Stanford mall for a mother/daughter lunch at McDonald’s and then back to school shoe shopping. Stanford is an outdoor mall with lots of very nice stores and Sophie LOVED it.  Lots of screaming “Cute handbag, nice outfit “ etc as she ran by the various stores and looked in the windows. She was pretty wild in the shoe store but then again, what girl doesn’t love shoes?  The place we went was a shoe store was a place my parents took my sisters and I every year for back to school shoes and it was quite special to learn from the man who helped us that he was the son of the man who used to fit my sisters and I and that his father was still around.  Funny how things go full circle.

Back to Stanford we went for her neurosurgery check in.  Ah the amazing doctor Edwards never ceases to demonstrate how much he cares.  He was quite disappointed to read about her recent diagnosis and told me all he could think was “ can she never get a break?”  He was THRILLED though to see alert and happy and even more THRILLED to tell us her head CT showed her shunt/ventricles are completely unchanged from last year.  GREAT NEWS.  I know she’s only 4 but she’s certainly aware. She asked him all about the pictures he took of her head and made a point of thanking him for fixing her “special head” all without me saying a word.   Once again, I was reminded how fortunate we are to have so many people in our children’s lives who care.

Trent continues to become more independent.  He is all boy.  He loves his skateboard, all his balls and has become quite a baseball player.  Although our backyard is small, our driveway inside the gate it quite long and he’s figured out how to make different part sections into bases.  He’s also become quite a fan of kicking the soccer ball with me and it’s become my special thing I do with him several times a week.

This week with Sophie showed me how important it is for Aaron and I to have 1:1 time with each of them and next week I plan to take Trent to lunch and shoe shopping.  I know shopping won’t thrill him as much as Sophie, but I still think he’ll appreciate “mommy/big boy time” and will be a great opportunity for us to enjoy some special time together.

And it’s a whole new world.

It’s official our Sophie has Polyarticular rheumatoid arthritis about 30% of kids who come down with RA have this type.   It’s an autoimmune disease and while there is no cure, it can be treated. We’re about month into a variety of drugs to try and get it under control.  Unfortunately while they do help, each comes with side effects.  The prednisone has got to be the worst.  She is hungry 24×7 and I mean NON-Stop.  She reminds us of that Children’s Book ” The Very Hungry Caterpillar”.  Every other word out of her mouth is about food.   It’s the first thing she talks about in the morning and the last thing she mentions at night.   She’s even been waking up at 1am-3am and coming to ask me to get her a “snack”.  Thankfully she’s eating most healthy stuff but you’d think that we had a house full of teenage boys by the way she’s going through bread, fruit, cereal, … well everything.

Our kitchen counter now looks like a pharmacy.  She gets 4 syringes of meds in the morning and evening plus 2 ground up pills.  Tonight we will also start her on shots that she will get 2x a week.  Poor Aaron, he’s just dreading giving them to her (since he was the one who got trained at it while I entertained her during our doctors visit).  He’s been beyond amazing though all this – making sure to track all her meds and diligent about making sure we stay completely on top of it all.

We need the rheumatology folks every two weeks.  The team at Packard is seeing us and the entire team is great.   On our fist the doc who saw Sophie came in sporting stickers, bubbles and bling (she is a girl) to allow he and I to talk.   He bent right down to her level and quickly connected to her.  We’ve been told this will be a long-term relationship with another specialty.  Thankfully the entire team seems great so all things considered – we’re pretty lucky.

This is not the summer we planned but we’re still trying to make the best of it.  All this has been pretty tough on Trent.  He understands she doesn’t feel well and tries for the most part to not push her, but he does get frustrated when they’re at the park and she cries or begs to go home. The neighborhood kids though have been great about playing with him and keeping him busy when his sister is not up to being his playmate.

I never though Aaron and I would be back in the middle of another big medical thing.  Suddenly we’re back in managing multiple drugs, doctors appointments, wishing we’d paid attention during school when metrics were taught and expanding our relationship with our pharmacist.

While we always knew that we’d have long-term issues with Sophie’s hydrocephalus and both of their kidney issues the RA seems so much more overwhelming.   I know we can do it- we just wish for once our little Sophie would just get a break… Just once…

This has week was filled with doctors visits and medical issue for our little Sophie girl.

The first part of the week was her yearly check in the neurologist who manages her seizure disorder.  Thankfully our check ups in Palo Alto have really, really minimized so much so that Aaron and I were a little out of practice with juggling the childcare, coordinating the drive time etc.   However, it all comes back pretty quickly.  Since my office is closer to the clinic and Aaron’s job allows him to set his own schedule a bit- we decided it would be best to have Aaron bring Sophie to be at work, I’d take her to her appointment and then he’d pick her back up at Apple from me.  Sophie especially loves the part where she gets to hang out at Apple for a bit.  Over the years she’s gotten to know several of my colleagues pretty well and not a distraction when she’s there.  And of course Apple includes a visit with “aunt Jamie” who has always been especially close to both twins and someone they both adore.

For the most part the appointment with their neurologist went well.   Nothing new and things were pretty much the same.  She still shows a slight weakness on her left hand side and while it’s something we need to be aware of  – the doctor doesn’t think it’s significant to warrant occupational therapy at this time.  I know this guy is suppose to be really good and I’m sure he is but once again I found myself why he went into pediatrics.   He ZERO connection with children and not much with parents either.   I’m not sure if he thinks we haven’t realized our challenges or what but went on and on with me that I needed to be  “prepared” that Sophie would probably have learning delays as she got to be school age.   I so could’ve done without the sermon.

Aaron and I are definitely aware of the possible future challenges she may have but other than continuing to work with her everyday and getting her special services when it’s recommended- I don’t know what else I should do.  I know I can be pretty tough on doctors but I do listen.  I just want the input to useful and actionable.   Sitting around worrying that she may have future learning disabilities is about as useful to me as worrying I’m never going to get taller than 5’. 2 What’s the point?  It won’t change anything.

Sophie’s struggle with joint pain continues and seems to get worse everyday.  Our pediatrician has upped her dosage of Motrin but its not really working and getting her into a specialist has been the top priority.   But then there is the schedule……

I called up to Packard and begged and I do mean BEGGED the scheduler to get her in as soon as possible.  So then I was told while I couldn’t do anything as a parent, our pediatrician could- if they had a “doctor” to “doctor” discussion.  So for days now, our pediatrician has been calling Packard multiple times a day – trying to get Sophie seen.  But…. It turns out the computer won’t accept patients when there is no avaiilable appointment time.   That’s a really hard message to give to a 4 year old who can barley move and cries for hours at night due to the pain.

Ah but the power of persistence.  Our pediatrician was so annoyed by the whole thing and our inability to get treatment that she finally directed us to go to the emergency room – in hopes that Stanford would page the pediatric rheumatologist on call and we’d finally get some relied for Sophie. My big sister who works in insurance was less than thrilled with this plan when I shared it with her but at some point- you just gotta do what you gotta do.. Our pediatrician faxed our labs and called them and told them to expect us. So off we went on Saturday afternoon (after yet another night of no sleep since Sophie cried most of Friday night due to the pain).

It was a long afternoon there but they finally gave her morphine and it seemed to help a bit.  I told the very nice young medical student what I was after (the pediatrician rheumatologist and off he went to try and get it to happen.  While we couldn’t get the rheumatologist to come over the emergency room as we hoped, the very persistent medical student was able to convince the doctor to see us on Monday (apparently the medical student paged him 5 times and the doctor said he’d see us during his lunch hour on Monday if they medical student would stop paging him).  Like I said… whatever works.  They also took a ton of x-rays at the request of rheumatologist and additional blood work in hopes that we would’ve have to start on Monday with a ton of tests- but could look towards a treatment plan.  The rheumatologist also prescribed stronger meds (big surprise- he said Motrin totally wouldn’t alleviate her pain) so now she’s just had her first dose of something stronger that will hopefully help the inflammation.

Poor Trent all this has been pretty tough on him too.  He so wants to play (as he’s a very, very active 4 year old) and to have his sister just want to lie around is quite frustrating for him.  Thank goodness for Charles next door.  He’s Trent’s favorite person in the whole world and is more than happy to help entertain Trent.  We are so grateful for Charles and the wonderful people who help care for our children.

Hopefully tonight will bring a much-needed full night of rest for the entire Keene household.

The first part of the week was me calling Packard to beg for an earlier appointment rheumatoid arthritis clinic

And So it goes…

And so it goes..  It’s so hard to believe it’s July. Time just seems to speed by.

Last week we went to Mammoth for the Keene family reunion.  What a great time!  75 Keene’s all in one place.    The weather was perfect and the accommodations were awesome with most of the family (Aaron’s immediate) staying together.   His sister and her family were just 5 minutes down the road, which allowed for tons of immediate family bonding and fun. The Keene family (the 75 clan) is like nothing you’ve ever met.  Everyone is nice, happy and makes you feel so welcome.  All that with the incredible Mammoth Mountain scenery made for an incredible weekend.

Sophie’s hydrocephalus typically doesn’t favor altitude and unfortunately this trip was no different.  She tried so hard but her body definitely told her what it needed and that was SLEEP.  And lots of it.  Trent on the other hand had the time of his life with his cousins. Hours, and hours of play.   You have never seen a happier guy.   We are truly blessed with an amazing family!

I can’t believe it’s already July.  For the last several weeks our Sophie girl has complained of foot pain and on some days she has been limping.   Aaron and I have had many discussions about what to do including what type of doctor to take her to (orthopedics, etc) and so whatever reason I thought I’d be efficient and take her to urgent care last Sunday night.  I figure since it was probably some sort of sprain we could just have her examined, get an x-ray and be done with it.  I’m not sure what’s wrong with me.  Why I thought that was a good idea is beyond me.  Pretty much there is 4 hours and $20 I’ll never get back- and Sophie was still in pain.

So off we went to our pediatrician on Monday.  They are so great.  We always come in with challenges (the doctor laughed and said when she heard we were coming all she could think- was simple normal for once) Unfortunately it wasn’t.   After being looked at by two doctors in the practice and we were sent off for a whole series of blood tests. We will still have one more advance test to come back next week (it had to be sent our to a more sophisticated lab) but the preliminary diagnosis appears to be juvenile rheumatoid arthritis.   Thank goodness for our pediatric practice.  They’re the first ones to recommend that something is beyond them and reach out for a specialist.  So next week we’ll be heading up to Packard to a new clinic.  Poor Sophie though, several of her joint are now swollen and she’s in a lot of pain. We’ve been giving her children’s Motrin every 4 hours but it’s beginning to help less and less.

For whatever reason this is harder than so many of the other things she’s gone through.  I guess it’s because we kind of thought we had everything in maintenance mode and now- it’s one more thing.    And nothing can beat the feeling of “how is it that she just can’t get a break?”

In spite of this all, we are so thankful for both of them. Trent is such a little man now- getting himself dressed, expressing himself and trying to be a big boy (although he still loves his blankie, to be held and his thumb).  And Sophie, well she’s Sophie.  She’ll just keep at it.

And June ends….

Wow- 2009 is half way over. And we’re having a GREAT summer!!

Aaron’s back at work (big giant WOOHOO!) and our childcare plan is fabulous.   The most wonderful Tia is watching Trent and Sophie in the mornings and the ultimate is that Charles comes over almost every day, which completely makes Trent’s day.

Christina – a nursing student, who watched them when they were babies while she was in high school, covers the afternoons.  Christina- though is never one to sit still and everyday comes with an activity. The children’s discovery museum, the zoo, and the beach- it never ends.    A great summer is definitely in front of us.

In early June we did our annual Shasta trip at the Tsadi resort and which this year included Aaron’s folks.  It was such a great trip!   We rented a boat and the water was up a bit from last year (just a hair) but made for an easier trek down to the dock.   And with the kids being 4- it was a whole new world   Much more independence- but self-entertainment was easier-sort of.

The resort we go to has an incredible pool, which Trent loved. Sophie is going through a “ TOTALLY afraid of the WATER” phase so she was just a spectator.  She did the same with the Lake Shasta.  Lots of great hanging out, chasing lizards, deer watching, and soccer games and of course- loving being with Grandpa and Mamaw Keene.  We feel so fortunate that our little ones get to spend time with their grandparents on vacation.  Trent also got to fish with his Papa.  Such a high for him.  It was so special to watch them together.

And of course no vacation with toddlers is without drama.   They were so BUSY in the cabin.  Sunscreen is a funny thing- very foamy and very attractive to 4 year olds.  And Trent just had a festival.   All the adults were out on the deck and our toddlers got too quiet.  Sure enough- Trent just went to town.  Sun screen on Sophie (head to toe- she’ll never get sunburn), the TV, all the walks, the bedding you name it- covered in foaming sunscreen.  Aaron just about had an attack while Grandma Judy and I could hardly contain ourselves with laughter.  Needless to say, Grandma, Grand pa and I took Trent down to the pool to help defuse the drama.

And then there is Sophie.  All was good until I screamed with panic while Grandpa Bobby was pulling the boat and Aaron was trying to see if his shoulder was up to water skiing.  I thought something had flown out of the boat and Grandpa Bobby took a quick turn.  So poor Aaron flipped in the water and our little Sophie rolled across the boat before I could grab her life vest.   She rolled right into the interior of the boat and smacked her nose- big time!   After everything she’s gone through – a possible broken nose seemed minimal.  With her nose swelling I started to call our pediatrician from Shasta but it turned out to be quite involved – going through their answering service and all- in a place where it was hard to get a cell signal. So when in doubt- call in the big guns and reach out to a friend.  Prior to our vacation our very awesome friends Kelly, Mark, Jaimeson, and Grayson had come to visit us- and were still in town.  Kelly is one of my 5 close (old f girlfriends from high school and an awesome doctor.  And she knows our Sophie girl. I called her from Shasta and she immediately went into doctor mode and talked me through what to look for (pupils equal and reactive) and Sophie’s medical issues.  Thank goodness for friends and Kelly’s “ Katie you will know if you have a major issue”.   We totally expected a broken nose given Sophie’s swollen nose but sure enough- just a little bruising and NO broken nose.   What would be a family trip without a possible visit to the ER?

Our great summer has continued with the annual Willow Glen street dance  (the kids danced their butts off), father’s day with both grandfathers, neighborhood barbeques, playing in the evening with the neighbors and lots of fun with Tia and Christina.

But there is the heat.  Once again I’ve been reminded that I am responsible for global warming.  I will never live down my “ I’m not paying  $6,000 for 4 days a year” when we considered installing air when we did our remodel in 2004.  And here we are with a daughter whose body can’t do heat and a world that is unfortunately getting warmer every year.   Poor Sophie struggles so.  She just can’t manage her internal thermostat and makes it so difficult for her.  She just screams and cries.   Nothing I can do to sooth her.    I know Aaron and I need to buck up and get air but for now we are fortunate to have the neighbors who do have air and are always happy to see our toddlers.

Next week we’re headed to Mammoth for the Keene family reunion.  We’re looking at about 60 Keene’s and a ton of fun.  Our only concern is Sophie.  Her hydrocephalus causes physiological issues that make it difficult for her to do attitude.  Aaron’s dad has the same issue- just different physiological reasons (Bobby’s is his heart).  I had heard that there were meds that we could give her to help with altitude sickness but after a great phone tag festival trying to discuss it- the neurosurgeon nurse practioner finally left a message on my phone saying Sophie’s condition prevented her from taking any meds that may mask a shunt issue and to make sure we had their phone number in case of issues.   All this is so hard.  I really want her to be able to see and enjoy the mountains (and of course the great family event) but not at the cost of making her uncomfortable.  We’re definitely going but my plan “B” is to drive her down and call aunt Lizzy to come pick her up- since for a little weekend retreat.

Fingers crossed for an AWESOME and UNEVENTFUL family reunion where our very special toddlers can finally meet all their Keene relatives.

,

And it's June…

It’s hard to believe it’s June. Where has this year gone? And I can’t believe our “babies” are now 4 year olds. And yet, they are still babies in so many ways.

Pre-school was a resounding success. They absolutely loved it. The school we picked was just perfect. It had a great teacher to student ratio and was located on a local college campus. Since the teachers were in training, they really wanted to be there and the kids definitely benefited from their passion. Both Trent and Sophie got to know lots of other kids and made some great friends. I think it was good for them to make individual friends and build independent relationships – and branch out a bit.

The San Jose State lab preschool seems to fit right in with what Aaron and I want for our children. Lots of attention, based on play, no pressure but learning–without HUGE expectations. The funny thing was, I was totally freaked going into the parent teacher conference. I think in my head I thought it was going to be like a performance review (of which I find especially challenging to receive) and anticipated the worst. However, all my worry was for nothing. They got glowing reviews with fair constructive criticism (Sophie mostly – on attention and following instructions etc) but all good to know. It’s been hard for them to understand summer vacation, but the transition came at a good time with Aaron going back to work with J&J (WOOHOO) and Christina, our new baby sitter, starting for summer–and we just flowed right in to it. Childcare can be a drama, but we are so blessed. Mornings with Tia and afternoons with Christina. I just know it’s going to be a good summer.

The medical stuff continues to plaque us. I know I knew this right from the beginning but some how being 4 years into this–it still doesn’t get any easier. In addition, due to professional drama I’m been experiencing, I fast tracked all their medical appointments in the event we’d be losing our medical insurance (that concern has now alleviated itself someone).

Trent continues to struggle with his hearing and, after being diagnosed with mild to moderate hearing loss, had tubes and his adenoid removed. It was supposed to be minor surgery, “no brainer,” they said…But surgery is still surgery, and we both wanted to be there. Unfortunately my parents weren’t able to help us out…so disappointing. My stepmother said they couldn’t come because the cable guy was coming. Needless to say my parents are “fired.” Thank goodness once again for the neighbors. Tia kept them longer and Jean took the day off to hang with Sophie. Truly a blessing since the minor surgery turned out to be not so minor.

Trent had terrible time with the anesthesia both during the procedure and much more so afterwards. His breathing got very shallow, and he just wouldn’t wake up. It was like we were right back where we started 4 years ago–freaking out with the monitors and keeping the oxygen mask close by. Fortunately after several hours, he finally came around. The recovery though took much longer than anticipated. He ran a fever for several days and just wanted to be held. We are now over 20 days post-op and Trent is finally just feeling himself. The doctor had said one in fifty kids has a difficulty with the procedure and, of course, our little man was the one. But now we know, Trent doesn’t do anesthesia well due to his chronic lung disease. Scary, but good to know. In late June he has another hearing test to determine if the tubes resolved his hearing issue. We’re nervous, but we’re hoping for the best.

Sophie continues to thrive. We’re still working on her left side. She skips on that side and hasn’t mastered her bike- but it’s improving. The Keene mantra is FLAT FOOTED. We also haven’t mastered potty training. The doctor doesn’t have any magical ideas- her urologist just said it would take time.

Trent for the most part has mastered potty training although nights are hard. He just sleeps so soundly and forgets to get up. This weekend I finally went out and got a water proof mattress pad. It won’t necessarily help the festival of laundry we’re going through but it will make it a bit less smelly.


You think it gets easier and somehow it just doesn’t.  Tomorrow we’re taking Sophie to see the urologist to get the result of her recent ultrasound.  Lots of drama involved getting to the appointment (which required the MAMA to come out to help get us an appointment this month) but whatever the result are – we’re ready.  I’m thinking it’s probably not good news given the “ominous” we have results message from Packard but I guess it is what it is and here we are.
For whatever reason, as she’s developed, Sophie’s brain injury becomes more and more a worry. It just hurts my heart.  She’s come so far and yet I see the delays. She had trouble with skipping, (not on the left side); potty training has its own drama, and her inability to master a bicycle (like her brother).  I know these issues are hard on me but I know even though she doesn’t show it.
And then there’s Trent.  Recently we’ve noticed issues with his hearing (lot’s of what and uhh”), which drove me to hit the panic button for a hearing test.  Although I knew the results were fabulous today we got the written results.   Mild to moderate hearing loss.  Wow.   Mommy moment.  I knew this but yet- seeing it in type makes it hit home.  We have a plan to get him into ENT (and the mommy sense of urgency to get an appointment asap with help from our wonderful audiologist helped up get in) but still – it’s a moment.  He’s come so far and now this.
We’re are so proud of our babies and yet as much as we were told that we’d be totally caught up at two- you’re never really.  It just goes on.

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