August 2007

It’s been a busy couple of days for the babies. On Wednesday I took Trent to speech and Sophie and I did the park (it was Aaron’s baseball night so it was all me and the babies). Although I wasn’t with him, Trent’s therapist told me post therapy how thrilled she was with his progress. So many words and sentences. She said his days of therapy are numbered and she’s confident we may not need to go until he’s three (when Early Start stops). We are so proud of him. He’s just exploded with his speech.
Sophie and I bonded at the park while Trent was at therapy. I had thought she’d want to watch the basketball players but she wasn’t that interested. The 1:1 bonding was nice though. She’s such a funny little thing. She knows her limitations (this particular park has inclines to the slides) and knew when her balance failed her and would say “mama help” and I knew she needed to hold her hand. It’s hard to acknowledge that she’s 2 1/2 and is still having walking difficulties but I’m glad she can tell me when she needs my help.

Yesterday Grandma Keene (mamaw) and Grandpa arrived. Next week the entire Keene family will be going up to Tahoe to enjoy a Keene family reunion. The babies were beyond thrilled to see Grandma and Grandpa. Its’ so nice to see them. Last night we had the pleasure of sharing “music in the glen” with them. It was so very, very special to watch the babies dance with their Grandpa and Grandma. I know the babies are busy but Aaron’s folks about chasing the babies around. I know his folks are tired at the end of day but they just keep running after them and the babies are so happy they’re here.

Last night we had our neighborhood street dinner and both babies had the time of their lives. Trent just loved playing with Charles (who of course watched over him) and the other kids. He so wants to be a big kid. Sophie on the other hand was thrilled to see Gaby the 1 1/2 year old across the street. They had complete female bonding including pushing toy baby carriages around. The progressive “let’s not stereotype girls as mommies” struggled with it but the mommy of Sophie who watched her thoroughly enjoyed herself made me realize we probably need to get her a carriage of her own. As much as we want them to be their own people, it’s funny how nature determines what they like. Trent is all boy and loves sports while Sophie is all girl- with appropriate toys.
Sophie continues to have her good days and bad days though. Last night we had hoped she’d be worn out from playing at the barbeque but unfortunately not. She and I once again bonded over the Lifetime Movie Network until 4am. I am so hoping tonight we all sleep.
Today Gayle the baby’s early intervention therapist came to the see them. She’s such an amazing lady. Today they practice cutting fruit with wood fruit toys. She’s been so impressed with Trent’s language expansion and his ability to put sentences together. She did ask me though if I’d noticed a plateau in Sophie’s speech development and facial movements (like sticking her tongue out when she can’t find the word). I think she was prepared to start the conversation gradually but once I told her we were aware and had call into the county to get her assessed by a speech therapist, Gayle seemed to relax a bit.
They’re both so, so busy but Sophie continues to confuse us. There are times when all she wants to do is sit and suck her thumb (and say’s no play) but then 15 minutes she’s breaking into the extra bedroom to jump on the bed. Aaron and I are so unhappy about this new activity and tried to strategize on a way to keep them out of the room without locking ourselves out of the room. I can’t wait till she can tell us what’s going on. Trent on the other hand is much easier to read and I can almost always tell how he feels, what he wants and what he’s thinking. It’s funny how they’re so different.

It’s been a busy couple of days for Trent and Sophie. And yes, I need to acknowledge it – although we’ll forever think of them as our babies they are definitely toddlers now. Such a big step for “the mama” to acknowledge that are very much their own people.
On Thursday I took Sophie back to Packard to be evaluate by the neuro team. I almost cancelled in the morning since she seemed so very “Sophie” but every time I’ve done that it’s been followed by a very off balance, lethargic day- which has left me kicking myself for canceling the appointment. No great findings at her appointment. Her walking and balance wasn’t at the proficiency she’s shown the in the past but was definitely improved. The goodness was though was I got to meet the new fellow who assures me he’s pretty much there 24×7 (and I really liked him) and we agreed that the next time she’s acts “acute” we’d have her scanned at the CT lab. They’ve now put in a standing order and we can just call and say we’re coming- to ensure we can view what’s happening. The worry is the last time her shunt failed, she was scanned one day and her ventricles were enlarged but the following day when she was scanned, they were normal and we were sent home. Her shunt quickly failed after that. Granted this all happened last year, but the neuro team believes this is Sophie’s pattern and we be prepared for her to follow the same pattern. All this is not ideal but I’m so glad we have a plan.
Life goes on though. Thursday night we took them to “Music in the Glen” where they were dancing fools. Unfortunately Sophie’s sleeping issues have returned and I feel like I practically have a relationship with Victoria Principal and I’m almost tempted to purchase her skin care products at 3am. Thank goodness my purse and the phone are just too far away when I’m half asleep. We have got to find a solution. I’m now on my 5th day and am bordering on idiot.
On Saturday morning my friend Kelly, her husband Mark and her two boys came to visit us in the morning to do the Farmers Market and the park. We had such a wonderful time. It was so special to have the babies play with Kelly’s boys. She and I have known each other forever (one of the 5 close girlfriends from high school) and it meant so much for my kids to get to know her boys. Trent was Mr. Personality but unfortunately Sophie was having one of her mornings and just wanted to cry and sleep. So much the renewed happy child we had on Friday. The busy weekend continued on Saturday afternoon when I took Sophie and Trent up to central California to visit Aunt Liz. And her family. The babies love Aunt Liz and Uncle Randy so much. Ever prepared, they bought a blow up pool, a beach ball and bubbles for entertainment. They had also borrowed portable high chairs to make feeding easy. My sister’s family is sooo good with Trent and Sophie. It is clear they are loved and watching the children with their Aunt, uncle and cousins just warms my heart. Uncle Randy was quite the music man with Trent. He got out his electric organ and Trent got out his Elmo guitar- they were quite a band.
Unfortunately Sophie’s sleeping issues continued while we were at Liz’s and Sophie and I spent most of the night trying to calm Sophie and get her to stop crying. I am so hopeful tonight it the start of a very balanced sleep week.
The folks at Liz’s church have been extremely thoughtful and supportive through our many trials with the babies and today the elders at Liz’s church gave Sophie the Presbyterian version of the “anointing of the sick”. Although the babies were baptized catholic (since I am a very, very liberal catholic and Aaron agreed 14 years ago to raise our children catholic) the focus for us is faith and if this blessing today helps Sophie feel better get back to normal- it’s the right thing.

Sophie girl is a little better today. Not a 100% but much better. We’re still worried though. Her balance is still a bit off and after watching Trent’s incredible growth in speech over the last 2-3 weeks- its suddenly looking like Sophie has plateaued.
The neuro team at Packard called me today just to check in (from out discussion last week) and I shared that Sophie had issues. Although the neurologist has said he thinks she’s fine the neuro team (Summer the nurse practioner) acknowledged that every time I’ve raised a issue I’ve been accurate and wasn’t so quickly to just call it normal. So tomorrow Sophie and I will be squeezed in to the neuro clinic schedule. Hopefully we can just be checked by the nurse practioners and given the all is fine signal but she did say if they had concerns we’d have to wait for Dr. Edwards (who always runs 2 hours behind) and worst case scenario- get another CT scan. She suggested I bring food, toys and perhaps my Nordstrom charge card since the clinic overlooks Nordstrom (and I think sometimes woos me from the Mary Johnson clinic).
This afternoon I took Trent to speech and he did awesome (his new favorite word). Big long, long sentences. Mama, please give me the ball. Mama, please let me play with the plato etc. It goes on an on. He is so sweet and I could tell he made Lisa his therapist day! (as he made mine)

Today was another hard day for our Sophie girl. This is so hard. She wants to play and be normal so badly and yet- she can’t. She tries so hard to run and walk but then grabs on to furniture or walks to keep herself from falling. Aaron and I are both struggling so much with this. Watching her is just breaking our hearts. She so not herself. She tries very hard but just doesn’t laugh, play or engage like she used to. I always knew there would be challenges but watching her digress after she’s come so far is beyond what either of us would’ve imagined.. Thank goodness I work less than 15 minutes away and can run home. Our poor caregivers, I’m sure they get tired of hearing from me. Thank goodness we have Tia. She and Charles know Sophie so well and can completely read her. It is so reassuring.
Today Sophie had physical therapy with Karen and Trent had Early Intervention with Gayle. Due to an Apple product launch (a Macworld in August) I was unable to be at home with Sophie’s PT but got home for the very tail end of Early Intervention. They were making plato muffins. Gayle is just the best. We are so, so thankful for her. PT for Sophie though was unfortunately was bust. She was clinging with Tia, uncooperative and just really wanted no part of it. Hard to tell how much of this is being my very stubborn daughter and how much of this is just not feeling well. Karen’s on vacation next week but later in August we’ll just go back at it.
Trent on the other hand is just a speaking fool. He has so much to say. He’s just exploded. We are so proud of him. Complete sentences, multiple words- every day he continues to amaze us.
I haven’t wished for my mother since we had the babies but suddenly I find myself longing for her. I have this reoccurring dream that she comes to me and say’s she can’t stay but knows that I need her and once again I’m having that dream. She’s been gone over 20 years and I know I’m hit my 4th decade but somehow I feel like having my mother here would give me the strength (she was always so strong) to deal with Sophie’s set back and not feel so helpless. I have just got to buck up and do everything I can to support my family.

It’s been a tough couple of days for the babies (or at least for Sophie). On Saturday I took them to Happy Hallow with my parents. My folks hadn’t been there since my nephew was 4 (he’s now 21). We all had a nice time but it was so hot- it was a bit exhausting. Sophie also wasn’t herself. She’d smile and try to engage in the rides but didn’t seem her usual up self. It was the same when we went to the zoo. Grandma Carol was trying to show them how to feed the animals and Sophie – usually the outgoing one was very sedate. I know her chest was probably bothering her but it seemed more than that. Trent though tried to make up for her and was Mr. Chatty and outgoing. Running everywhere. It was a fun more but exhausting and they came home and slept for almost 4 hours. I was supposed to go up to my sisters but given how Sophie felt- decided to stay home. Assuming all goes well we’ll go next week when Sophie is more herself.

Sunday things continue to worsen and Sophie just wanted to sleep, be held and cry. She just kept saying “night, night” and lying down. Trent can read her so well. He just knew she didn’t feel well and left her alone the whole day. I’m so used to playing with them together but it was nice to have time alone with Trent. We played a great game of soccer in the driveway for over an hour while Sophie slept. Trent just loves the ball and is doing so well at kicking. It was such a joy to be able to play with him like that.

On Sunday afternoon my parents came home to help with Sophie so I could pay attention to Trent and try to get some household chores done. Sophie just continued to cry and want to be held. Her balance was also very off as was her speech. It was so scary. We’re almost positive she was having seizures but they are so hard to validate without her being able to tell us anything. I debated calling Packard but as good as they are- getting the doctor on service on a weekend doesn’t typically provide results and either your told to go to the ER or just leave a message for your regular doctor. Given that, we just decided to ride it out through the night and watch her closely. Poor Aaron didn’t get much sleep last night lying by her side but I know it made him feel better.

Today her balance continued to be off and I called the neurologist. I had a long talk with the nurse practioner who works for both Dr. Olson our neurologist and Dr. Edwards our neurosurgeon. Maureen looked through Sophie’s records and instructed us to go up on her seizure meds. She also spoke with me in detail about how this is expected given that Sophie has brain damage and the concerns Dr. Olson expressed about Sophie ability to articulate was probably related to her brain damage. I know Sophie has issues but Maureen kept saying brain damage over and over again and it just was so painful. I’m not pretending there is nothing there and I know what were up against but somehow the words brain damage almost feels like she’s being called retarded. It felt like by reminding me of how what was the root cause the nurse practioner was trying to make me feel ok with what’s happening now and not to expect to much from Sophie as she grows.

The babies have both come so very far but today felt like a step back on our long road.

It’s been a long couple of days. I knew life would be busy when the kids got older and they were doing sports and lots of activities, but somehow much like their birth- the business has come prematurely. Somehow for me when I was told they needed weekly Early Intervention therapy and each baby needed weekly-targeted therapy- it sounded so easy but now that it’s daily life it’s a bit more complicated. On Wednesday I came home early to take Trent to speech (as I do most weeks). This week though required that I take both Trent and Sophie as Aaron had a softball game. Somehow white pants and high slides seemed like a good idea in the morning when I got dressed in the morning but seemed less so when I was playing with Sophie in the park across the street from the speech therapy office. We both got so dirty. Sophie also was Miss chatty. Never the shy one, she just about went wild when she saw the very “cut” guys playing basketball without shirts and there was a WHOLE lot of “Hi Big Boy” I nearly died.

Although I didn’t get to participate, Lisa – Trent’s therapist was beyond thrilled with his progress. A ton of sentences, “I want XX” and his speech is clearly moving up and to the right. We are SO proud of him.
Last night I decide to take them by myself to our local “Music in the Glen” so we could all dance and hopefully burn off energy. It was great fun but definitely hard two on one. Trent stays really close to me but Sophie is such the social girl and makes it her objective to meet everyone she sees. They both love to dance though. The bands are always perfect too. Lots of 70s so the babies get right into the grove.

Sleeping has been tough though. Last night Sophie screamed hysterically for almost 3 hours. I was beyond myself and horrified (so much that I sent Tia a note apologizing for waking them up) that we probably woke the neighbors with our open windows. Nothing I did soothed her. She’s had a cough and gurgling in her chest which may be part of the issue but it didn’t really matter- she was beyond upset. Thankfully my office was moving today so we were told to work at home. I did work at home but somehow brushing my hair was never a priority and it didn’t really matter how I looked.

Today I took Sophie to there pediatrician for her on going wheezing. The doctor was thrilled that we’ve haven’t seen her since January but did believe Sophie has bronchitis coming on. Sophie is now on meds to knock is out and we’ve got our fingers crossed that it doesn’t get passed to big boy. Not sure where that came from in August. I also spoke to the nurse practitioner in Dr. Edwards and he’s read her recent scan which is STABLE (I put it in caps because that is the way all medical personal have said it – no better so worse) but has said he does believe the seizures may be in issue and they continue. I also learned that if she’s ill with a fever or maybe even in extreme circumstances with a bad fall (like her recent face plant) seizures can be triggered. This new information was hard to hear but good and made me realize I need to become an expert on epilepsy in order to really understand everything she is going through.

We continue to try and keep them busy though and tonight we took them to the Santa Clara county fair. It’s clear the fair in on its last legs but that was a major motivator for me wanting to take them. It feels like a piece of history leaving us. We worried that Trent would fear the animals but he stepped right up in petting zoo – even wanting to hold the chickens. He did seem afraid of the giant pigs but they were so loud and rude that even I was a little unnerved by them. Like I said, the Fair is clearly on it’s last legs but I am glad we were able to do it and go with our very wonderful neighbors. Once it’s gone, it’s certainly a memory we’ll always have.

My neighbors continue to be an amazing sense of strength. Somehow Jean was able to tell how tired I was today (probably not hard since I looked like hell) and offered to bathe the babies and feed them so I could get Sophie’s prescription, grab some dinner and fill up the car. It sound like a small thing but it definitely helped me recharge my batteries.

Tomorrow I plan to take the babies to Happy Hollow and then up to central California up visit my sister. My goal is a very busy, action packed weekend. Hopefully both sleep well, feel well and are in good humor.