Keeping up with the Jones' and Preschool Madness

My offices close at 3 pm today until January 4, so hardly anyone is here today, and the ones that are are blowing off real work, like me! I haven't posted in a long time, not because there is nothing to write about, but because I have been so busy with the end of the year madness that I have hardly had time to breathe.

We are not going away for the holiday break and I am so excited about that. Usually we travel to the East coast to see my parents, but now that the twins are 2 and cost two extra seats AND flying across the country with them is about as fun as sticking a needle in your eye AND it's always a nightmare to travel to and around the East in winter anyway, we opted to stay home. I am a tiny bit sad about not seeing my family and wondering how it will be on Christmas Eve with just my hubby and I, but am planning on making a yummy dinner and got a nice bottle of champers, so it won't be all bad! The twins love our Christmas tree (our first one since they were born) and get really excited when we turn the lights on in the evening. We have been opening the doors of the advent calendar each morning and they have fun identifying santa and horses (reindeer) and mamas (any woman pictured) and trees. It's cute.

Other than the upcoming holiday break, my mind has been filled with thoughts about walkers and preschools. I had a mini breakdown about Drake and (his lack of) a walker a few weeks ago. It seems all my bloggy friends kiddos and kiddos his age at CCS are starting to use a walker. None of this therapists have even mentioned a walker to me. So I finally asked, and his PT told me he wasn't ready. But I pushed and wanted to see if he could do it. So she got him all strapped into his AFOs and stood him in a reverse walker. He stood there for a minute or so, then slowly kinda sank down onto his knees. It was a little heartbreaking to see, but I saw what she meant about not being ready. I just get impatient. Everyone always says how functional Drake is and how his CP is mild/moderate and how well he is progressing. But then I see him at 2 years old and barely able to stand for a minute in his walker and I get confused by the mixed messages. He also steps with a scissor gait (mostly at the ankles), which I get concerned about, but his PTs don't seem so worried about it.

So, I finally gave in and borrowed a stander from CCS and we've been putting him in that 30 minutes twice a day. Standing. Yes, it does come before walking! He does great in the stander actually. It's a very basic type, with pads around the front of the thighs to lean into and a belt around the butt/lower hips. There is no support for the upper body. He stands in it in front of a table and draws or plays or eats.

I have also been thinking about how Drake has very few doctors. Believe me, I am happy about that, but it also makes me think I may be missing something? He sees his pediatrician and a developmental pediatrician. And an eye doctor for his lazy eye. That's it. No neurology. No physiatrists. He's never had an MRI. He's on zero medication. Again, bloggy friends kiddos and other kiddos his age at CCS are starting to get botox and serial casting, etc. None of this therapists has mentioned these things to me. So, I finally just up and made an appointment with a great physiatrist at Children's Hospital Oakland who is practically impossible to see, but somehow I got in.

Will have to add my preschool drama later...

Determination

Just love this picture of Drake my husband took today. He is crawling up the large stairs in our yard and you can see how hard he is working and the extension in his legs to pull his knee up over the lip of the stair.

Feldenchrist

In addition to receiving PT and OT through state-funded California Children's Services, Drake also receives PT once a week at Alta Bates Summit Medical Center, which is billed through our private insurance. A couple weeks ago his PT there informed me that they would be sponsoring and hosting a Feldenchrist conference at the hospital. She said they were looking for a couple kids to be 'models' at the conference and would Drake be interested. She thought of him because he is so easy to work with and is a total people person. I said sure, knowing nothing about Feldenchrist, but wanting to be helpful and because I was curious about the method.

We showed up to a packed conference room with a table and a woman standing in the middle (I believe her name was Anat Baniel and supposedly she is very well known for this method). The whole room was silent as they were filming the whole thing. I surveyed the scene and wondered how Drake would do being so 'on display'. But I strolled him over to the woman, who had a great way with him, and she got him comfortable on the table and started demonstrating her techniques on him. It was truly amazing to watch. I really had no idea what she was doing and she made obscure references to the power of the pelvis and various vertebrae of the spine. There was lots of slamming of hands and feet on the table for sensory input and lots of jiggling the hips back and forth. She worked with him for 45 minutes and he was great the whole time. It was like he was on a float, smiling and waving from his table to the onlookers.

After the session, she noted how he seemed to be sitting straighter through the pelvis. I could see it, too. I don't know that this is something we will pursue further, but it was neat to see a different approach. And we got a $50 gift certificate to Whole Foods for being a participant!

Halloween

We had a great Halloween. This was the first year the twins really got into it. Two years ago, they had just come home from the NICU. Last year, they were adorable dressed up as bugs -- Lucy a ladybug and Drake a bumblebee --but they sat in their stroller as we walked the 'hood and nodded off after a few blocks. This year, dressed as a pirate and a ninja, they eagerly reached into the bowls of candy offered at each house and enjoyed their first real piece of candy -- a lollipop.



Lucy is pretty much over the stroller these days. Our double umbrella stroller is semi-retired -- we now mostly use this cheap single umbrella stroller for Drake and let Lucy walk everywhere. Lucy boldly walked up the steps of each house we "treated". Myself or my husband would take Drake out of the stroller and carry him up to the door. Yes, it was a little tiresome taking him in an out of the stroller all night. But we wanted him to be able to participate, to knock on the door and reach in the candy bowl.

After we got home and put our over-tired, sugared-out kids to bed, my husband said, "I really can't wait for Drake to be able to trick or treat on his own." I realized through all of our ins and outs of the stroller, it never really occurred to me that Halloween could be hell on a mobility-impaired little one. All the walking, all the up and down the stairs, all the running to keep up with the high-on-sugar friends. It kind of bummed me out. We'd had such a fun night and at the end of it I was left thinking about future Halloweens and not savoring the moment of this one.

I consoled myself by thinking a) he will get up and down the street on his own, i just know it and b) he has a great wing-woman of a sister who will always make sure they are both long in lollipops.

Stander and mental spiral

Yesterday I went to pick up Drake from PT only to find him all strapped into a stander. I can’t really explain what happened to my heart right then, except to say that it dropped a bit. He was being supported by padded “clamps” around his mid-section and thighs. There was a big tray attached to the front. There were springs and screws and lots of metal and wood. And he just looked so… trapped.

You see, Drake hasn’t needed any “equipment” yet. And no one has mentioned any equipment to us. So, it was a bit of a surprise to see him strapped into this contraption, especially since he can pull himself to standing already. His therapist saw my face and quickly said, “This is something I am just trying.”

She went on to say that she was trying to follow the directive of his developmental pediatrician. This doctor recently evaluated Drake and said she wanted him to be doing more standing. She wants more weight-bearing through the legs for bone density and for proper alignment of the hip joints. And Drake hates to stand, because he is all about being mobile. He wants to crawl, throw balls, and crawl after said balls. When he pulls to stand, it's as a means to get on the couch or get something off the table. He doesn't like to just hang out standing.

Given that, I feel successful when I can get Drake to stand at a table for 15 minutes. And I can’t do it alone, because someone needs to support him while someone else rolls him a ball across the table. Balls are very important to him right now.

The PT said that while 15 minutes of standing a day is good, she is looking for 30+ minutes of standing 3 times per day. And am I prepared to support Drake in that position for 1.5 hours every day? Well, no, I am not. I have another toddler running amok who needs supervision. Getting 15+ minutes ONCE a day with Drake is almost impossible.

The PT mentioned that this stander has so many springs and such because it is a model where it’s not locked straight upright. This model lets the whole thing move so the kiddo can practice weight-shifting. Hearing her reasons for the stander made logical sense to me. Because I work full-time and have another toddler at home, I don’t have the luxury of manually working with Drake for extended periods of time.

So, I asked her the other questions on my mind. Is this stander something we would borrow from CCS? How long did she think he would need it? Her responses made my heart drop further. No, we’d need to buy this and it’s about $1,800. He would use it for a couple years. A couple years?! I cared more about that comment than the money. All his therapists have said they think he will walk within a couple years. So, how can he walk if they think he needs help standing? She stressed that even if kiddos are walking they often continue to use the stander for stretching.

She also stressed that we didn’t need to decide now if we wanted to buy it. She was just trying it out because she wanted to follow through on directives from the dev ped. She said she wasn’t sure if he 100% needed it, but it’s something to consider.

I left feeling sad and discouraged. Sad from seeing my beautiful boy strapped into this contraption and wondering if this is his future? Discouraged because I don’t feel we do enough for him. His nanny is great, but it’s very hard with two toddlers and one care-giver. She tries, as do we on the weekends, but it’s tough to feel that we’re doing enough. There is very little real ‘therapy’ going on at our house outside of his various weekly appointments.

I know everyone feels this. I know everyone wishes they could do more. I know many parents have seen their children strapped into contraptions and some with more springs and screws than this one. I know, I know. I feel blessed for all that we have and for what Drake can do.

It was just a sucky moment. I think, too, we have been riding so high on all his mostly positive recent evaluations, that this made me realize that even through all the great stuff he can/will do, the CP just isn't going away and never will.

Aqua Boy

I took Drake to his first “Mommy and Me” swim class yesterday. To say he loved it is an understatement; the kid seems to be part fish. He impressed his instructor with his calm entrance into the water and his complete lack of fear getting his face wet (and not just splashed, he likes to submerge his face in the water to blow bubbles).

We spent most of the 30 minutes “swimming” after a ball that he’d grab, throw, and “swim” to again. It was so adorable and encouraging to see him kick his little legs and move his arms to get to the ball. By the end of the class, she had him floating on his back across the pool, which he loved, too.

The pool is heated to a spa-like 93 degrees. And the class is tailored to kids under 3 who have physical and/or mobility issues. There were about five little ones in the class, all with a parent in the water working on the games with them.

We can’t wait to go back. It’s once a week through the winter/spring. I am really excited to have found “something else” for Drake to do that is fun and therapeutic. Also, his pediatrician said swimming is the best activity to do in winter as you can’t catch the flu in a chlorinated pool. It’s way less germ-y than the playground or gym-based class.

Appointments

Drake had two evaluations this week. The first was his bi-annual clinic at CCS. I thought he was seen by a developmental pediatrician there, but it turns out she is a phsyatrist. At any rate, she was the one who 6 months ago told us she thought Drake could "outgrow" his delays and sent us all into that mind-place where miracles happen. I remember being more realistic and thinking "how do you outgrow a brain injury?", but left feeling happy that she felt so positively about Drake and his future development.

This time she was also very positive, but did note the high tone in his knees and ankles that she said she didn't notice so much before. She noted his preference for w-sitting. She noted neurological patterning that would most likely be with him for life. But she also noted how his reflexes are in the normative range, most primitive reflexes are gone, his range of motion is within a good functional range. She noted what everybody notes about Drake, how motivated he is to move, how cheerful and social he is, how great is is that he loves books so much. She feels very strongly he will be an independent walker. Her prognosis: rehabilitation potential good.

Three days later we say a developmental pediatrician who hadn't seen Drake since January. He was rolling and prop-sitting then. She was so excited to see him come crawling down the hall. The first part of the appointment was with her colleague who ran a battery of tasks to measure cognitive, speech and motor skills. Like other evaluations he's had, his social/emotional and cognitive skills are right on track, but surprisingly she put speech at 21 months, which is within normal range. His speech therapist put him at 12-15 months a month or so ago. I felt she was being generous with some of her tests - like if she asked where the duck was on a page in a book and he touched just that page, not the duck, she counted that as correct.

Overall, a great appointment though. She also thinks Drake will walk on his own one day, he is so motivated to move. She told us to keep up the calories as he burns so many moving around. She really wants us to work on more standing, both for weight bearing through the legs for bone building and for preparing to walk. The thing is, Drake hates to stand. He's like, what can I do here? He wants to move. He has places to go.

Always remember...he's the happiest guy!

Mumbo Jumbo

Lots of jumbled thoughts today...

Drake has his next clinic with the developmental pediatrician at CCS (where he receives his therapies) tomorrow. This is the doctor who told us 6 months ago that she thought Drake would "outgrow" his developmental issues and sent everybody into a tailspin of emotions. Obviously, he won't "outgrow" his issues, he may have good rehabilitation potential, but "outgrow", no. I am so curious to see what she has to say now.

Next Tuesday, he has an appointment with another developmental pediatrician that he hasn't seen for 10 months. She is more grounded in reality, so I am curious to get her take, too, and see how it jives with the doctor tomorrow.

Drake just got his next 6-month goals from his PT at CCS (these are to be achieved by February, when he is 2.5 years old):

1) Maintain a high kneel without holding onto anything for at least 15 seconds
2) Pull to stand through a half-kneel (he uses his arms to pull himself up mostly now)
3) Stand holding onto something with one hand while using the other hand to play with a toy

I think he can hit these. He is already getting good at #2, with just a little assistance to plant the foot that is being used for the half-kneel.

We need to buy a new car. We don't know if we should bite the bullet and buy a minivan. We are thinking we will have a walker and maybe a wheelchair to lug around within the next few years. But we have gotten by so far on a station wagon and would love to replace it with another station wagon or small SUV instead of a minivan if at all possible...

Had a great weekend get-away with my husband and the twins last weekend. Spontaneously rented a little cabin in the mountains for a couple nights and enjoyed apple picking and wine tasting and hiking amongst the giant sequoias. The crisp fresh air is so good for all of us.

AFOs

Drake's new "dinosaur" AFOs came today! Here he is modeling them. They look a little long to me, but the fitter didn't seem worried since he won't be crawling in them.

Reunion recap

Today was the hospital where the twins were born annual NICU picnic. It's a chance see your kids doctors and nurses and families you may have met in the NICU. The twins were in the NICU for 8 weeks, so I got to know some people pretty well. I took the kids last year and it was all still so fresh then, I was really excited and almost nostalgic to see some of the nurses and families I got to know. This year, those feeling were not there, but I still went, hoping to see one nurse and one family in particular. The nurse was there, but sadly not the family.

When you check into the reunion, you are given a name tag for your kid with the gestational age of when they were born and their birth weight. Then you walk around, looking for people you know and checking out all the other kids and their name tags. Most of the kids seemed to be two or younger which makes sense for the reasons I stated above. I can imagine the NICU reunion becomes less important as your kids age.

Of course, I homed in on all the twins. There are a lot in the NICU! Here was one set of twins, born at 27 weeks, toddling around. Here was another set born at 29 weeks crawling. And another set of 32-weekers playing on the playground.

I couldn't help it. Seeing all these twins in perfect developmental form brought back all these feelings of 'why me'. Of course I am so glad for these twins and their families that they are doing well. But seeing the twins born even earlier than my guys, oh I don't know if it's good for me to go to these reunions.

I just kept flashing back to the night the twins were born, and the doctors saying to us, "Oh, 30-weekers? Those are the big babies! They will do fine! No worries, they'll just be here fattening up for a bit!". And we believed them!

Working the system

For the past 8 months, Drake has been receiving weekly in-home speech therapy through our state's Early Intervention program. However, California's budget crisis caused a new law to be passed that says children in this program now have to use their private insurance for speech therapy. And the Early Intervention program won't bill their services to insurance carriers, so no more home visits. Since we have private insurance, I was given 30 days to find new therapist.

I don't mind using my insurance to pay for speech therapy. I like using my insurance, because hey, I pay for it anyway. And if it means more kids without insurance get services, that is great, too. What I do mind is that we no longer get home visits. My hubby and I both work full time and every appointment out of the house is a logistical nightmare with our work schedules and child care. We already have 3 out of house appointments each week, this would add a fourth.

So I complained and sniffed around and found out that if you can show documentation that you are on a waiting list for speech therapy, EI will extend your home visits/services until you get off the said wait list. So what did I do? I found the longest wait list ever, over a year, at local hospital who provides pediatric speech therapy. I got a note saying we were on the list, sent it off to EI and got my home visits extended 6 months! We will revisit after 6 months and if we are still on the wait list, well, we'll get another 6 months!

Workin' it.

New tricks

I feel some big changes coming, people, I just feel it! Drake seems like he kind of plateaued over the summer after he started crawling on all fours in the spring. Don't get me wrong, that was so exciting it could have held me over all year! But, you know, I get antsy for the next thing!

The crawling has gotten faster over the summer and he has started crawling over things or with things. He can now crawl up low stairs or over your legs and will crawl with a book, blanket or toy in hand. But the changes I am seeing now seem less physical and more cognitive and verbal. He used to only be able to say one syllable and would say "Ma", "Da" and "Ba" (for bottle). Now he consistently says "Mama", "Dada", and "Baba". He is also repeating back words a ton more. He loves to say "bubble". Another two syllable word! I feel like we are on the brink of a little language explosion, and that excites me.

Cognitively, I am noticing changes, too. If you ask him to get you a book to read, he will crawl over to the bookshelf or find a book on the floor somewhere, and crawl it back to you. That is a three-step thought process I am told: first, get the book, then, remember where to go to get the book, then lastly, bring it to me. Awesome.

He got casted for his AFOs yesterday and I am excited to see what they do for him. Just by wearing his borrowed AFOs I have seen changes in the tone in his ankles and legs. He gets onto flat feet when standing much faster than he used to. And he is also trying to "walk" on his knees. He can sort of pull himself forward into a high kneel without pulling up on anything and then tries to "walk" on his knees.

I feel changes comin', I just do.

Benched

Drake has been working on sitting unassisted on a bench at CCS. When he wears a pair of borrowed AFOs, it really helps break up the tone in his feet and legs and he can sit for 30 minutes on the bench without falling off. 30 minutes is the max they will let him wear the AFOs since they aren't his and sometimes leave red pressure marks on his feet.

We were given the AFOs to take home and instructed to put them on him and have him sit on a bench for 30 minutes per day. It's amazing how quickly this exercise has strengthened his trunk and improved his balance! He can now do all kinds of upper body movements while sitting on this bench - clap, high five, play with a toy, eat - and still maintain his balance.

I took a video of him sitting on his bench today. You can see how he almost loses his balance a few times, but is able to self-correct. At the end, he is calling out for me, and even when he gets excited/anxious (which can kick in the tone), he still doesn't fall! This is only 40 seconds of video, but he ended up sitting there for a good 15 minutes, then grew tired of watching the US Open and wanted off...

Birthday re-cap and stats

I can't believe my little dudes are TWO! Time has flown. Their birthday is such a bittersweet day for me. Of course, I love celebrating their birth, but I so wish their birth had been under different circumstances. I remember looking at the clock at noon on Saturday, and thinking about where I was two years prior, hooked up to a magnesium drip and wondering what the hell was going on and if my babies would live or not if delivered at 30 weeks...

On a more positive note, they did survive and we had a little party for their second birthday with a few toddler friends and their parents. It was hotter than PANTS here in Oakland -- 90 degrees easily -- and luckily we had bought them a water table for their birthday present, which was a hit with all the kids. Everyone in the under 3 set arrived in their party best and left in nothing but a wet diaper. I guess that is a sign of a good party.

Today, we took them to the pediatrician for their 2-year well-baby visit. Drake is 27 lbs (44th %ile) and 35 inches (79th %ile). Long and lean. Lucy is 20 lbs (3rd %ile) and 32 inches (17th %ile). Short and skinny. Their pediatrician was so happy with both of them, though. She wrote a prescription for Drake's AFOs, so those will be getting ordered shortly. We also talked about getting him on the waiting list for theraputic horseback riding, which he can start at age 3.

I am currently researching preschools for the twins to start next year when they are 3. I really want to keep them together, so it is a challenge to find the right school. It seems I will need to find God or gads of money. All the regular schools that are open to special kids are either associated with the Church or really expensive.

The search continues!

Happy Birthday!

Today is Drake and Lucy's 2nd birthday (though I still think of their real birthday as November 5, their due date)! We had a fun party for them this afternoon and I am exhausted. I'll write more later and include some pictures.

Beach babies

We just got back from a week in Ocean City, NJ. It was fabulous.



We rented a great house a block from the beach with my parents, sister and brother. My sister's boyfriend was also there for a few days, as were my aunt and uncle, my Dad's cousin, and family friends. It was definitely a full house at times, but I loved seeing everyone and we had many hands more than willing to help with the twins.

D and L loved the beach. They were completely exhausted and starving at the end of each day from all the fresh air, sun, swimming, digging and general beach action.

The kids daily routine was wake up, breakfast, beach from 9:30 until noon, back to the house for lunch and naps, back to the beach from 3:30 until 5:30, home for dinner and baths, and bed by 7 (my routine included coffee in the morning, a beer and a book on the deck during naps, and vodka tonics with my mom and sister in the evening). One evening we took the kids to the boardwalk and let them loose on the merry-go-round and the "flying dumbo" ride. They both did great on the rides. Drake was able to sit on his own horse for the whole carousel ride and loved going up and down.



WIth Drake's crawling, Drake was definitely the sandiest toddler on the beach. I am still finding grains of sand in various crevices. And his knees are totally exfoliated, too. But he did great crawling in the soft sand, the hard sand and in the little waves. He loves water and really enjoyed when we'd take him out to the deep water to kick and "swim".



There were a gaggle of toddlers on the beach daily (it is August on the Jersey shore after all) and Lucy had fun playing with the other kids. She was highly into digging and playing in deep holes that older children had dug in the sand. I think it was great for her to be with a bunch of typically developing kids her own age (and a little older). Though it made me a little sad wishing D could be in on the action, too. He'd get frustrated when we'd help him into a sand hole because he couldn't crawl out. So he spent more time crawling around and playing with the adults or by himself.



We missed a week of therapy and I didn't make him wear his glasses (didn't want them to get scratched with sand), so he (and I) got a much needed break from all that. He went back to CCS Monday, and his PT commented on how much more verbal he is just since last week when she saw him. Then his nanny said the same thing to me yesterday. It's true, he seems to be in a verbal spurt right now -- repeating things back more frequently, saying more new words, including a two-word combo: "all done"!

So a great vacation and now, back to the real world!

AFOs

Well, they're a comin'...

Drake has clinic in September and they are going to prescribe him his first set of AFOs. He has been using a pair of borrowed AFOs during therapy and now it's time for his own casted pair, ones that fit his feet perfectly.

I am reminded by his therapists that AFOs are a good thing: it means he is ready to do a lot more standing and they definitely help him with that, as they force him off his toes and onto flat feet. But I can't help think this is his first "equipment".

He will start out wearing them only an hour or so a day, when we are working on standing. He still crawls and W sits the majority of the time, and the AFOs hinder that, so they don't want him to wear them all day yet.

Here we go!

Happy campers

My husband and I have always loved camping. When we started to think about having a family, we'd talk about how much fun it was going to be to take our kids camping. Once they were born, we talked about waiting until they could walk, so it'd be easier on baby hands and knees. But now we don't really now when Drake will walk, so we decided to just take them camping anyway.

Sooo....we took them on their first car camping trip last weekend and it was (pretty much) a smashing success!

I did almost want to back out once I started to over-think the logistics. They have never slept in anything other than a crib or pack n play, and now we were going to ask them to share a tent and sleep on the ground? I figured naps were going to be non-existent, since it would be blazing hot in a tent mid-afternoon. And what about Drake and crawling around a campsite full of dirt, rocks and sticks?

But, we pushed through and went.

The drive was about 4 hours, and we stopped mid-way for food and diaper changes. They were great in the car -- napping, eating and "reading" books.




We got there and set up our site and the kids had a blast playing in the tent, rolling around in the sleeping bags, etc. I put Drake in a pair of hefty pants w/ reinforced knees and let him explore his new world. Did he get dirty as all hell? Yes. Did he love it? Yes.




They did amazingly well sleeping in the tent, too. We put down an air mattress that filled the whole floor of the tent, put them in their PJs and warm sleep sacks and said good-night. They cried a little at first, confused why they were shut into this tent by themselves, but quickly just started playing together and chatting and after a half hour or so, conked out, cuddled up together! I crawled into their tent to sleep with them when I went to bed. I was worried they'd wake up scared in the middle of the night. But they did great!



The next day, we put them in backpacks and went for a hike, then spent the afternoon on a sandy beach by a mountain lake. They loved the lake, of course. They are getting so confident in water. Both love being dunked completely underwater and are learning to hold their breath when they go under.

There were no naps as I suspected, but they were having so much fun being outside and seeing new things, that they didn't seem any worse for the wear. They were practically at home in the sleeping tent the second night (or just exhausted!) and we did another hike to a river the second day.



Then we came home, tired and dirty, but so happy that we made it through our first family camping trip and had fun doing it, too!

Speech eval

So the latest report from D's speech evaluation came in yesterday. As I expected, he is still very delayed, but did make progress overall. He is currently in the 9 - 12 month range for both expressive and receptive language. 6 months ago, he was in the 6 - 9 month range.

He has about 5 -10 good words that he uses consistently and in the correct context. Supposedly, kids this age should have 75 words they use consistently and in the correct context AND should be using several two-word combinations, like "Mama's keys".

I tried to count all Lucy's words, and she has about 35 - 45 good words. But she is really in a word spurt right now. Tomorrow she could have 5 more. She's doing a ton of repeating new words back. She isn't putting word combinations together yet, though.

D's speech therapist remains optimistic about D's progress. She noted some of his physical delays are holding back his expressive language -- such as opening the chest for voice control and control over some mouth movements. He is slowly getting more control and she thinks as that matures, his language will really pick up. His drooling is really improved, I think because he finally got all his teeth in, but also because he keeps his mouth shut more, and doesn't need to open it when he moves or concentrates, which he used to. He is also swallowing his spit more effectively. I used to have to change his shirt twice a day, now it's just the occasional chin-wipe.


So again, progress is progress, even if it's slow progress.

Eval time

Well, it's that time of year again. 6 months ago Drake had his last PT, OT and speech evaluation. That was December, when Drake was pretty much only rolling as a means of mobility, and pretty much rolling only to the right.

I was actually looking forward to this evaluation, because in my mind, he's achieved so much (especially in gross motor) in the past six months! He crawls, pulls to high kneeling, is starting to pull to stand. He sits independently and plays with toys with both hands.

However, his first reports came in and hit me like a ton of bricks. On paper, it shows he's only marginally improved in terms of age appropriateness. He is 21 months old and his gross motor skills only went from 6 to 8 months in locomotion, and from 7 to 10 in stationary! WHAT? Only a couple months progress in 6 months of awesomeness?

But when I sit back and think about it, I guess it seems right. Babies crawl at 8 months. Babies pull to stand at 10 months. That is how old Lucy was when she did those things. I guess it's easy for me to forget and to think how normal crawling at 21 months seems. Which is funny, given I also have a typically developing 21 month old.

His fine motor skills and language are pretty delayed as well. I am waiting on the reports from his speech therapist, but I am pretty sure it will be in the marginally improved realm as well. He has about 5 good words: hi, uh-oh, book, ba-ba, hot, hat. 6 months ago, he was at the 6-9 month level in language. Maybe he's at the 9 -12 month level now? We'll see.

The best news is that Drake is almost up to his age on his cognitive skills. He came in at 20 months for all the cognitive and social \ emotional evaluations. Woo-hoo!

I know these evaluations are just numbers and mean nothing about his outcome or his achievements. But, they are still tough to swallow, especially when I am seeing such progress and it doesn't translate on paper. His therapists remind me that the expectations are so much higher at this age than they were 6 months ago, when he was 15 months. So, it's easier to fall further behind at this age.

Whatever. I think he's doing awesome. And progress is progress!

What's awesome about Milwaukee

We just got back from a week in Milwaukee where Andy's parents live. The last time we were there was last May, when the twins were 7 months old. I remember wondering if any of Andy's parent's friends and extended family would notice that Drake was delayed. I laugh thinking about that now...they were 7 months old! Neither of them were doing anything except laying around on the floor. Of course, no one thought or asked me a thing about Drake.

Fast forward to this year. 20 months old. Lucy is running and has a bunch of clear words. Drake is crawling and has a few sort of clear words. There is a noticeable difference in what they can and can't do. Funny thing is, this year I was less concerned about people asking me about Drake. Maybe I have reached a new plane of acceptance? I don't know. Sometimes I don't think he seems that delayed because he is making such great strides and I am used to him and think he seems like any other kid. But when you see him next to Lucy, yes, it is obvious he is behind.

But everyone who came over to see the twins (and let me tell you, there were a lot of people. his parents hosted a "sip and see" just for twin viewing) was loving and engaged with them and if they noticed something was amiss, didn't say anything to me. I really appreciated that. Not that I would mind explaining his delays, but sometimes I don't feel like telling his life story to strangers.

The other thing that was awesome about Milwaukee was the stairs in my in-laws living room. They have a big carpeted living room that is "sunken", so there are 3 low and wide steps getting in and out of it. Drake was all about the steps. And by the end of the week, was getting up them pretty darn good. Wish we had some low steps for him to practice on here.

The last awesome thing about Milwaukee is that the in-laws also watched the kids overnight one night so Andy and I could have a get-away to Chicago. Awesome!

The dreaded W sit

Until Drake started seeing his physical therapists, I hadn't spent much time thinking about sitting. I surely didn't know the names of all the different ways to sit: the prop sit, the ring sit, the side sit, the (dreaded) W sit, the short sit, the long sit. I didn't know that sitting was such an important indicator of future mobility. I didn't know getting in and out of sitting is one of the most difficult transitions for people with CP.

Drake has been sitting for a few months. But he's been mostly prop sitting (using his arms to support himself) in ring, side or W sitting. He can get out of any kind of sitting, but he can only get into propped W sitting. When he wants to sit, he rolls to his stomach, pushes up to all fours, and then sits back on his haunches. This works well with his crawling, too, as when he wants to crawl, he just shifts his weight forward and takes off. When he wants to rest, he sits back on his haunches again.

We have loved all this progress with sitting, but it's not that fun for Drake, as he can't use his hands to play in this position. He can shift his weight to one arm or the other, so he can use one hand to grab a toy or open and close a drawer (new favorite pastime). But things that need two hands to hold, like a book or a bottle or something he wants to manipulate, just doesn't work in propped sitting. He tends to roll onto his back to play with things that require two hands.

All his therapists keep telling us to not let him W sit. When we see him do it, we are supposed to swipe a leg underneath for side sit. Or even better, transition him to ring sitting.

But recently, he is starting to lift up both arms in W sitting and sit there without any arm support. And even more recently, bring a toy up with him and play with it... with two hands...sitting straight up! But it's the dreaded W sit! And when I take him out of it, he loses his balance and can't play with his two-handed toy anymore.

I feel like such a bummer parent. He is so excited to have his new skill and is trying to do it a lot. And here I come, and knock him down. I keep thinking that getting the balance and trunk strength to sit unsupported in W sitting must help sitting unsupported in other positions down the road. Is it true that once they learn to W sit they won't sit in any other positions? That is how his therapists have painted it to me. But I could see letting him get really solid in this position, then helping him learn to sit unsupported in other positions, too.

Sailor boy

Just a cute picture of Drake dressed in a sailor suit that was first worn by my maternal grandfather in 1914.

Save state services!

Like most states, California is in a huge budget crisis. Governor Schwarzenegger has recently proposed cutting Early Start and other in-home services for developmentally disabled children by half a billion dollars! I don't usually get all riled up and political, but in this case I am. I just emailed all the assembly people in the state I could find email addresses for the letter below. If you live in California, please consider doing the same. Make your voice heard and save Early Start!

Dear Assembly Member,

I am writing to ask you to please fight for our state's Early Start program. We live in Oakland, CA and our 19-month old son, Drake, has Cerebral Palsy.

He has been receiving in-home services through RCEB since he was 3 months old. He gets physical therapy and speech therapy once per week. We feel these services have made a huge difference in his short life. At 17 months, he started crawling. His doctors didn't believe he would crawl until well after his second birthday, if at all. He also now says the words "Hi", "Bye" and "apple" and has learned to sign the words "eat","more" and "drink". His speech therapist taught him these signs.

Having to work full-time to support our family, having these services in-home makes all the difference. I don't know that Drake would be able to receive these services if my husband or I had to bring him to and from each appointment. Plus, the home is such a comfortable, familiar environment for Drake -- it's where babies are meant to be!

Drake loves his therapists, too. They have become like family to our family. Please don't take away his services or the positive people in his life. Fight to keep Early Start and in-home services for developmentally disabled children! It's really important to have these services available to children before age 3. Their brains are still plastic and can re-map motor pathways that have been damaged.

Thanks for listening and considering our plea.

House of puke and poop

It has been stomach bug HELL here. I feel like I have been through war and now have PTSD. Both kids had sudden-onset vomiting within 3 hours of each other last Thursday. Sudden, violent vomiting, that once the stomach was empty, turned to vomiting saliva, then bile and finally dry heaving. This vomiting episode lasted about 6 hours, at which point the kids passed out and slept through the night. Friday morning, they were pale and weak and would puke up every drop of Pedialyte we offered. By noon Friday, Drake had diarrhea. Lucy was lethargic and refusing to eat or drink anything. I had to use a medicine dropper to get her to take any fluids. Saturday morning, my husband came down with the bug and was completely out of commission. Drake was pooping wet diapers about every 30 minutes. Lucy was lying on the floor, floppy and mellow. Drake wanted to eat, but would puke up most everything he ate (though he was holding down fluids). By Saturday night, Lucy was so lethargic and cold, I took her to the ER for IV fluids. They promised it would perk her up and help her re-gain her appetite. It took 3 pokes to get the IV in. She screamed. The toddler sharing the room with us was vomiting onto the floor every 20 minutes. Finally finish the IV and are discharged, and as we pull into the driveway at home, she pukes all over the car. Sunday, she is even more lethargic than Saturday. She has probably only eaten half a banana and a few saltine crackers in 3 days. Drake seems better, holding down some food and drinking well, so I give him a milk bottle before bed. Go in to check on him a couple hours later and he's covered in puke. Monday morning, get Lucy up and she's covered in poop. Take both kids to the pediatrician where he weighs them and we find they've both lost about 1.5 lbs. Drake ribs are showing. Lucy had finally gotten to 19 lbs, now she's back to under 18. He tells me to keep pushing flat 7-up, saltines, chicken stock. No dairy! Monday day, Lucy seemed better. She perked up, was playing, wanted to eat and drink. I was thrilled. Got home from work to the report that no one puked or had wet poops all day! Today, she is lethargic again, though she did drink some soy milk and eat some plain noodles. Drake seems almost 90% well. He drank two 6 oz soy milk bottles and had crackers, waffle, banana, 7-up, Pedialyte. I got bold and put sheets back on his bed (I had them sleeping on the bare mattress since they puked and pooped so much it was silly to use sheets). Tonight, Lucy perked up a bit when my hubby got home. Please let her be herself tomorrow. It's been a long few days, people. No one tells you what it's like when your kids get sick and you can't get them to eat or drink. Especially two at the same time. And don't forget the husband. No lie, I probably got puked on 25 times a day and changed just as many diarrhea diapers. Amazed I am still standing, actually.

Just beachy

We are having a sweltering heat wave here in Oakland, CA. It was 90 at our house today and like most old homes in the area, ours doesn't have AC. So, we headed to the beach in search of some cooler air.

Last summer when we took the twins to the beach it was a nightmare. Granted, they were only about 7 months old (couldn't sit unsupported yet), it was foggy and windy, and they cried on the blanket the whole time. Good times.

But now, at 18 months, it's a whole new beachy keen world. Lucy was heavily into digging and would proudly and dramatically dump her bucket of sand when it got full. Drake was crawling around on the hard sand near the water and would have crawled right into the ocean if I had let him. He loved getting splashed by the little waves and each time I would try to re-direct him to crawl towards dry land, he would turn around and head into the water again.

It was a great day. It was also kind of a trial run on "do they like the beach?" as we are going to the the Jersey shore for a week in August with my parents. Now, I know they are going to absolutely love it.

New specs!

Lucy's next...

Drake's speech therapist called to tell me she thinks we should have Lucy evaluated for speech therapy, too. Since Lucy is always around when she's working with Drake, I guess it's fair to say she knows where Lucy is / should be with language development. I guess I realize Lucy doesn't have many words, but I haven't been concerned. Her receptive language is amazing. You can pretty much ask her to go get / pick up / bring any number of things to you. She can point to identify lights, eyes, noses, apples. And she babbles all day long, complete with inflection and pauses.

But it's true she doesn't say much. She mostly just points at things she wants and says something that sounds like "gaack". Her only really clear words are "hi" and "bye" and "eye". She doesn't repeat words when prompted. The other weird thing is she doesn't identify people. If you ask her where is mama or dada or auntie, she doesn't point or go to or look to the correct person.

I am all for therapy, but I feel so over-scheduled as is, I don't know where to fit yet another appointment in! Argh, thought we had avoided therapy for Lucy.

18 months (corrected) today!

My little dudes are 18 months old (corrected) today! Happy 1.5 birthday, Drake and Lucy!



Lucy got on the scale this weekend and she still only weighs 18 lbs! 18 months and 18 pounds. She is such a peanut.

It's a bloggy blog world

It's been about 6 months since I started this blog. Before I got pregnant with the twins, I never really read blogs. It's kind of strange since I work in technology for an online social media company. I guess it's fair to say I read Pink Is The New Blog for my celebrity goss. But that was about it. Now I have a whole slew of blogs I read daily, most of them about parenting, parenting twins, and parenting twins with a disability.

I remember finding the first of the blogs I still read now early in my pregnancy when I had first trimester bleeding and was diagnosed with a subchorionic hematoma (SCH). I googled SCH and found Goddess in Progress, Everyday Stranger, and Urban Artifact (who has since moved her site). They were all moms pregnant with twins around the same gestation as mine and I remember being so excited to read their posts and see that I was not alone with my SHC and that everyone was doing fine. We all ended up having boy/girl twins and I still read their blogs today.

Then when Drake was given his PVL diagnosis and the CP term was dropped for the first time, I called my best friend and cried to her about Drake and the long unknown ahead. She did some googling and emailed me a link to Cerebral Palsy Baby. It was right when Darcie was starting to crawl at like 18 months or two years or something and she looked so good and "normal". I remember my friend saying and me thinking, "Okay, this may not be so bad if this is what CP looks like".

Then I googled PVL and found all kinds of horrific things, but also Waiting for the Miracle. I got to know Alice and her amazing mom. Alice has more involvement than Darcie, so that was another example of the disability I put into my "what you could expect" mental bucket.

I remember getting the courage to comment on Alice's mom's blog. It was my first comment on a blog. She wrote me back and I read the email on my phone at a movie theater (I have a really good memory, I could probably tell you what I was wearing, but I'll refrain). I remember reading her reply and bursting in tears. She nailed exactly what I had been thinking and felt. How she started the blog because she felt so alone and searches for PVL only returned medical lawsuits and horror stories. She had so much more personal positivity to bring and progress and love. I still read her blog and wait for her posts. She has written some amazing entries that I feel I could have written myself.

I also really like reading the Galli-ringo Family, though she doesn't post much. Her girls are older than my twins, and her daughter Hannah seems like she is doing great and gives me hope for the future. She wrote an amazing post about taking her girls skiing, which left me in tears. We are so hopeful to have Drake ski or be able to get down a slope somehow as my husband and I grew up skiing, too. Plus, I think she lives in Vermont, which is where I was born and raised.

And recently, I've met Hopeful Mother and About The Small Stuff, more twin mamas, raising one twin with a disability and one without.

I feel like I know these people, though I've never met them. And I can't imagine my life without them and their families and their stories. Thanks for being there.

My last thought of the night is: I don't really know who reads this blog. I have Google Analytics tracking on it, so I know some people find it. I hope they are parents and parents of a young baby who unfortunately has been recently diagnosed with PVL or CP and that they find some hope, courage and encouragement here. And that they meet these people I mentioned above, who have been so inspiring, open and supportive.

Good report card

Yesterday, I finally received a copy of Drake's PT evaluation from December. Yes, it took CCS four months to send me a copy! But, I forgot to be annoyed when I re-read the 6-month goals they had set for Drake. By June, he would be able to get from sitting into a 4-point crawling position, 3 out of 5 times. Yeah... it's APRIL, and not only can he get from sitting into a 4-point crawling position EVERY TIME, he is CRAWLING on all fours now. And pulling to high kneeling, and sometimes even to standing! I felt like putting a gold star on his report and sticking it to the fridge!

Singing and signing

Drake has been in speech therapy for a couple months now. His therapist comes on Thursday afternoons, which means I am at work, so I don't get to see what she does with him. My sister is with the twins that day, and she is great at filling me in on what they worked on and what we should continue to work on. Like singing. The therapist has been singing "Old MacDonald" with him, and now if you sing that song, he will do the "ei-ei-oooo" for every verse!

And she taught him the baby sign "more", to request "more" food when he eats. Drake is a very demanding eater, and will pretty much start fussing the second he gets in his high chair if there isn't food on his tray at that moment. She wanted to give him a way to communicate without fussing. This morning he finished his pancake and started to fuss, and I said "Do you want more?" and did the "more" sign, and he did it back!

Yay for speech therapy!

A typical day

Now that Drake is crawling and pulling up to high kneeling on furniture, my legs, whatever, he suddenly seems like a typically developing kid. In fact, it is within the normative range to crawl at 17 months. I think the age range to walk is 9 - 18 months. I know he won't be walking at 18 months or 24 for that matter, but today he seemed like any late blooming baby. I took him to get fitted for his glasses (which by the way are going to be so cute. he looks like a baby hipster as they are thick and square), and he sat quietly on my lap while the eye doc measured him, then he got squirmy so I let him crawl around the floor. The eye doc (who knows nothing of his PVL or delays as the prescription was just for the glasses) was fussing over how cute he was. She kept watching him crawl around and pull up on things and saying "He'll be walking in no time!", etc. The fact is Drake looks so typical to look at him. If you saw him in a stroller, high chair, swing, whatever, you'd never think, here is a kid with CP. And now that he crawls so well, it's like he aged 10 months in a few weeks. A few weeks ago, he rolled like a 6 month old would. It's amazing how a single physical feat can "catch him up" so fast. I know we will back on the downslide when he doesn't walk in the next 6 months. But today, I am enjoying his relative age appropriateness!

The fertility post

After trying to get pregnant unsuccessfully for two years, my husband and I went down the IVF route and got pregnant on our first try with the twins. Yes, I have gone down that dark, dark road where no one wants to wander where I wonder if I was ever meant to be pregnant. I have wondered if "forcing" it with IVF and subsequently having twins and my body not being able to hold the pregnancy past 30 weeks somehow makes me responsible for Drake's brain injury from being born 10 weeks too early. But I haven't had enough wine to really go there tonight, so I will move on...

We were able to freeze two embryos when we did IVF, and there they have sat, frozen in a lab in San Ramon, CA. I just got the "rent" letter for the embryo storage and my husband and I have decided it's time to donate them to research. In the back of my mind, since learning about Drake, I have sort of held on to the thought that we could keep them for 10 - 15 years and use their stem cells to help Drake, once stem cell research has become more researched and accepted. But the place will only keep them for 5 years and the stem cells aren't Drake's, they are some unborn sibling and I don't think that they will be able to help him. I think in the long run, they will help Drake, and countless other people, if we donate them to research now. But even though I know I will never go through IVF again (meaning using them for future children), it's hard to let them go.

That brings me to the other thought of the night. More kids. My doctors could never find out why we couldn't get pregnant naturally. So after the two years of trying like bunnies to no avail, and the IVF and the twins, BANG, I got pregnant naturally when they were 7 months old. Go figure. I subsequently lost that pregnancy to a miscarriage and was secretly relieved, as I was in no place to have a third child when my twins (one of whom had been diagnosed with PVL and his outcome so unknown) were little infants.

But now that they are 17 months and we have a better idea about where Drake is headed developmentally, the question of three has come up again. As I mentioned, I would never do IVF again, but if it were to happen naturally, and the pregnancy stuck, I think I would welcome it now.

I don't know about you other twin mama's, but do you ever feel that having twins is like a 1.5 in terms of pregnancy and not a 2? I feel like my babies are growing up so fast and I'll never get these baby moments again like I would if I was able to have a second child a couple years after the first. I feel like I'd be so relaxed with the next kid, having it not be my first. I feel like I'd definitely have a singleton, so that would be great, too. Maybe I could make it past 30 weeks! But I am also terrified of the dark thoughts I alluded to earlier. I don't want another pre-term baby.

Of course all this is completely hypothetical, as I don't know if we can have a successful pregnancy naturally. But the letter about the embryos and my best friend being pregnant naturally after 6 years of trying and two unsuccessful IVFs, makes me have baby on the brain.

Glasses!

I took Drake to the pediatric opthamologist today because his pediatrician noticed at his last visit that he sometimes has a "lazy eye". I sort of notice it. It's very mild. I mostly notice it in pictures. I have seen some kids with CP wear patches over their good eye to strengthen the bad one. I sort of thought that an eye patch would be what the doctor would recommend. But no, he gave Drake a glasses prescription!

The doctor said he had a very mild "lazy eye" and that the glasses would correct it in one to two years. So, these are not permanent glasses. He said that he wouldn't attribute his PVL to the lazy eye, that lots of typical kids have it. I remembered that my little brother had a lazy eye, too, and wore a patch for a while. The good news is that the doctor said his optic nerves are perfect and sometimes the PVL incident causes damage to the optic nerves. So, we dodged that bullet!

Anyway, GLASSES! On my beautiful little boy! :) I know he will be so cute in them....

Drake's new feats - video

My sister's boyfriend is here this weekend with his camera and I've taken it over to get some crawling, pulling up and general mischief video footage. Enjoy!

Moving towards "No, no"

It seems yesterday Drake woke up and said to himself, "Today is the day I will crawl!" (for the record, he is 16.5 months adjusted). I put him down in the living room and when I came back in a few minutes later, he was gone. Yeah, he had crawled into his Auntie's room, about 15-20 feet away.

That was yesterday. Today, I can already see he is getting faster and more coordinated. His crawl is kind of like a modified bunny hop/shuffle, shuffle right now. My hubby has taken to calling him "Hop-Along D". But, he is figuring it out, getting that reciprocal movement in the legs. I am so proud of my little guy. He so badly wants to be where his sister is, follow her around, get in her business.

Which leads me to the next point...getting in trouble! So far, we haven't had to discipline Drake much, because he hasn't been able to do much that warrants it. But this morning, he bunny-crawled over to Lucy and promptly ripped the book she was 'reading' out of her hands. I scolded him and took away the book, like I do when Lucy steals toys from him. "No, no, Drake. We don't take books away from people when they are reading them. When Lucy is finished, you can read that book". I handed him a different book, but it was too late. He was hysterical. I don't think I'd ever said that to him before. I (happily) think I'll be saying it a lot more.

First time in a shopping cart

I almost never go grocery shopping with the twins. I always go on weekends when my husband is home with them or on my way home from work. Before I went back to work, I'd sometimes be on a walk with them and swing by the store on our way home, but they'd be in their stroller. I couldn't for the life of me figure out how to grocery shop without a stroller when you have twin infants. There is only one seat in the cart! The whole point of this is a round-about way of saying that they've never really sat in a shopping cart! But today, I had to run out for some fish, and Drake was kind of fussy and seemed like he could use an outing, so my hubby and I divided and conquered and D and I headed out to Whole Foods. Drake loved sitting in the cart! He held on to the handlebar so he wouldn't tip to either side, but other than that, he sat there as straight as a needle, looking around, smiling at everyone. And it was fun for me, too, to have my little dude keep me company while on as boring a task as fish-shopping.

Random and unrelated

Not so much to report, just wanted to let everyone know we are still alive and well, and I have been reading everyone's posts. I have been so busy at work, the days just fly by. And it's hard to admit, but part of the reason I have nothing to report is that I am not home with the kids very much anymore and therefore don't see all their little daily achievements.

But they are doing great. Drake is still trying to figure out this thing called crawling. He is so determined. It doesn't seem that he will army crawl, he wants to go right to quad crawling. He never tries to scoot on his stomach, he is all about pushing up to quad and rocking. He can do the arms great, and his right leg is good, too, it's the left leg that isn't sure when to move forward.

I want to take a video, but I lost my camera last weekend. I've been losing things like crazy the past few weeks. Saint Anthony is NOT on my side.

We did take the twins to a petting farm last weekend. Lucy loved feeding the animals pieces of celery. Drake was pretty frightened of the animals, especially the cow, and especially when the cow got right up in his program.

We are going to take Drake to the eye doctor in a couple weeks to see what he thinks of his "lazy" eye. It's barely noticeable, but his right eye doesn't always look straight at you. I am assuming they will give him a patch?

Both twins went for their 18 month well baby and shots last week. Drake is 24 lbs and 32 inches. Lucy is 18 lbs and 29 inches. She was pleased with everything about them and they don't go back until they are 2! I don't think we've gone 6 months without any doctor appointments in a while!

I have also signed Drake up for swimming this summer. It's a program for kids with motor issues and I think he is going to love it.

Built-in best friend

The twins are supposed to be napping, but I keep hearing loud peals of laughter coming from their room. First one, then the other, then together. I can't resist, I have to see what they are up to.

I crack their door open an inch and peek in. Lucy is standing at the far end of her crib that faces Drake's, jumping up and down. Drake is laying on his stomach, but has pushed his bumper down so he can see Lucy. I watch a minute longer and see that Drake is playing a "peek-a-boo" game with the bumper. He lets it go so it pops back up, then pushes it down again. Roars of laughter from each.

Raising twins is no easy task, but every difficult minute has vanished in this moment. They are so lucky to have each other.

Another first

Drake is working so hard to crawl. He can get himself from his stomach up onto his hands and knees, and then he just rocks back and forth. When he tries to actually crawl, it's more of a lunge forward that ends up with him back on his stomach. However, if you move his legs for him, he will move his arms to crawl forward and can "crawl" for several feet that way.

Last night when I put him in his crib, he immediately rolled to his stomach and pushed up onto all fours. I left the room to get Lucy and when I came back in, he was on his knees, holding onto the rail of the crib, and smiling the most pleased-with-himself smile! You could have blown me over with a feather. I have never seen him pull up to his knees before. It wasn't perfect, he hadn't quite figured out how to walk his knees in towards the rail, so he was kind of sagging in the middle, but he had figured out a way to reach up and grab the rail and pull himself up!

Another feat I am hoping to see a lot more of!

Gross Motor Function Classification System for CP

A woman I met on the site Twinstuff (a great support site for anyone with twins) sent me this link after she read my latest post about not knowing what "mild" means when it comes to CP.

http://www.canchild.ca/Portals/0/outcomes/pdf/GMFCS.pdf

She lives in Canada with her twin boys, one of whom was recently diagnosed with CP. I know every child is different and when children are young it is especially hard to say what their future looks like, but I was eating this up.

Anyway, I hadn't seen levels of severity of CP classified like this before and thought I'd share...

Out of the mouths of doctors

Lots of thoughts in my noggin tonight. Today Drake had "clinic" at CCS (where he receives his therapies). I guess they occur every 6 months and since Drake just hit his 6-month mark at CCS, it was time. The clinic involved meeting with a doctor and all his therapists to go over his progress and see if he needs any medical devices to be ordered or whatnot. The doctor was nice, although I got the sense early on that maybe she wasn't all that clued in. For example, when we were going over Drake's medical history and I told her Drake had been diagnosed with PVL, she asked what that was. What? She is an older doctor who advises for a state service that supports kids with physical disorders.

Anyway...

She looked at Drake, got him down to his diaper, and did her evaluations. At the end she said, "This kid is doing great! You know, some preemies outgrown their physical delays and are all caught up by age 3. Drake may be one of those kids." So I said, "Well, that's fabulous to hear, but my husband and I are fairly certain he will have a CP diagnosis by age 3." And we think this because even though he is making great progress, he still has a brain injury and is still very delayed and has neurological signs of CP, like mixed tone, etc. jShe replied, "Maybe, maybe not. And if he does, it would be a very mild case of CP, I would think."

We should be out celebrating that a doctor has said this to us. But it felt so far removed from what his other doctors have said, that I felt cheated by the good news. His other doctors agree that if Drake were diagnosed with CP, it would most likely be mild (though we don't know what mild means), but not that he is going to "outgrow" his delays from PVL and be like any other kid. Doctors need to be careful what they say to parents. My sister was at the appointment and she called my parents to tell them the news afterwards. Then they called me, all excited that they heard Drake isn't going to have CP.

Urgh. It's so hard to be on the roller coaster. And I know it doesn't matter in the long run. Whether this doctor thinks he will have CP or not doesn't change him in any way. He will do what he is going to do regardless of a diagnosis.

But again, doctors need to be careful what they say and mindful of whose hopes they lift and crush.

Mix Master Drake

Drake got the Leap Frog Music Table for Christmas. It's probably his favorite toy. The model we got doesn't have legs that come off (so if you want to buy this, check to make sure you get the one with detachable legs). Drake can sit on the ground in front of it to play, but it's still a little high for him. So, we put him on this little footstool we have and now he is the perfect height for it. His balance is getting really good as he can sit on the stool for a long time. I have my sister's biology text book under his feet so they are grounded.




I have a really cute video of him playing with the music table, but stupid Blogger keeps rejecting it, even though it meets all their uploading requirements.

Tumble

Today, while my sister was watching the kids, Drake fell off her bed and onto the hard wood floor. She was upset and scared to tell me that it had happened on her clock. She said, "I left him for 10 seconds and he was in the middle of the bed. He just rolled himself off. I didn't think he could roll like that on a soft mattress."

He is fine and so I am left actually feeling happy that he is such a mover and shaker these days, he actually took a tumble!

Spreading the sickness

Saturday we went to a friend's kid's first birthday party. When we got there, the kid was taking a nap, so the twins and the other babies at the party were playing with each other and with the birthday boy's toys. All is fine and dandy. Then, the kid wakes up and comes into the living room. I go in for a birthday hug and see a face covered in snot with two huge, green "snail trails" coming out of his nose. His left eye is red and oozing green gunk, too. I say to his mom, "Is Felix sick?". She replies, "Yes, and he has pink eye, too!".

I spent the rest of the party trying to get the twins to play with the toys we brought and trying to sanitize their hands when the hostess wasn't looking. Who doesn't cancel a party when they have a sick, contagious kid?!

And of course, today, Drake woke up with a red, weeping eye and runny nose. Good times.

Speech evaluation

Drake's speech evaluation went well (I heard) as I couldn't get away from work to be there. I was told she put 3 things on the table -- a doll, a ball, and a bottle -- told him what they were, and asked him to pick up the correct object when asked. He could only identify the bottle. That makes sense, as we don't have any balls and we only have one doll, which neither twin plays with. She asked if he points at things (no), can correctly identify facial features (no), hands things to you when he is "done" playing with them (no). She did like his range of vocalization and that he has two real words --"Uh-oh" and "Hi". He also waves "bye-bye" and will clap on command. So there is some expressive and receptive language going on. She also wanted to watch him eat and drink. She didn't give us a report on her findings, but she will be seeing him once a week starting in two weeks. Another appointment to add to the weekly calendar!

Talking points

Not so much to report these days. I have been so busy with my new job, there hardly seems time to sit back and reflect on what's been on my mind. Drake is getting a speech evaluation tomorrow. I, once again, have no idea what to expect. I assume she will try to get him to make a variety of sounds and peg him at an age for expressive and receptive language? I will be curious to see what she thinks of his sounds and what age she places him. I don't think he is too far behind in language. He makes lots of sounds and babbles and blows bubbles and imitates simple things like "Uh-oh". I often can't tell if Lucy or Drake is making noise when I hear them from the other room. Of course, I don't know what his sounds and babbling mean for his speech down the road. Like everything related to Drake, I am sure we won't know. And I am sure when I ask the speech therapist if she thinks he will have solid speech patterns, she will say "I don't know, we have to wait and see." Getting a little tired of the "wait and see", but at the same time, I think Drake has surprised us with what he can do and speech I am hoping will be no different.

New therapies?

I have been thinking of additional therapies for Drake and wondered if people out there could tell me which they really loved and really made an impact?

I don't think we can do ABR due to the logistics of that one, but I have been inspired reading success stories of those who do ABR.

I am most interested in the Anat Baniel method and HBOT. Also, craniosacral therapy. Anyone with experience in those? Any others I may not know about?

Inspiration

Today is my husband's birthday and to celebrate we took the kids to the new California Academy of Sciences Museum in San Francisco. It was great, though it was also a complete madhouse. Anyway, as we wound our way around the aquarium, we passed a woman helping her young daughter navigate through the crowds in her reverse walker. I couldn't help myself, I stared.

I have never seen a kid in a walker out in public. Never. I don't know why. I just haven't. And since having Drake, I've thought about it a lot. Why haven't I seen a parent with a child in a walker at the grocery store? At the park? Walking around the neighborhood? I've really started to question it. Because I know when Drake gets his walker, he is going to be taking it to the park, the grocery store, and on walks down our street. Because that is where I am going to be and where Lucy will be, too.

I have read posts from other parents who talk about the hard work of getting a kid in and out of a walker, of carrying the walker AND the kid, of the emotional drain of other people's stares and questions. I wonder if these things have made the parents of children with special needs in my neighborhood stay home.

But today, seeing that mother carve a path through the crowds so her child could walk up to see the fish made my day. And she didn't even seem too worse for wear for it either!

Lucy walks!

Making great strides

We had a great appointment with Drake's developmental pediatrician today. She saw him for his 15-month (adjusted) check-up. Most kids go every 6 months, but at his 12-month appointment, she asked to see him again in 3 months. He has progressed a lot in the past 3 months as I have mentioned before. It seems to me that at about 12-months, something clicked and he started to do a lot more. The doctor noticed this, too, and was so pleased with all the things he is doing.

First off, she said his tone was great, so relaxed in the legs, hips, and ankles. She didn't see any reason why he would need AFOs at this point since he has such good range of motion in the ankles and she is confident he will quad crawl in the next 6 months or so (!) and doesn't want his feet to be braced when he crawls. My heart squeezed hearing this. He is making attempts to crawl now (when he is on his stomach he kicks his legs like he is crawling, but without them being under him), but it's hard to imagine him actually crawling.

She loved his sitting and that he can transition from sitting to quad to rolling. He did great on all the cognitive games, too, looking for the duck under a blanket, playing peek a boo, pulling the string to get the ring, clapping on command, and mimicking me when I said "Uh oh" (his favorite thing to mimic). She is going to put in a request for speech therapy now, even though our state's program usually makes you wait until 18 months, because he is doing so well verbally.

AND she doesn't want to see us again for 10 months! YAY! I am so proud of Drake and my family for all the hard work.

Tired

Whew! It's Friday again and I am completely gassed! It's only been two weeks of being back to work and I feel like it's been two decades! I am giving huge props to all the mothers out there who also work full-time. I feel so blessed to have a nanny that comes to our house at 8 am each day. I hand off the twins to shower and get ready for work while she feeds them breakfast and gets them dressed. I can't even imagine trying to get everyone dressed, fed, and out the door by 8 to get to daycare.

I think I am especially tired since night-time sleep has been a challenge recently. I have always bragged (maybe too much, as payback is a bitch) about how sleep is the twins' superpower. They both started sleeping through the night at 9 weeks old. And by sleeping through the night, I mean 12 hours -- 6:30 to 6:30. It's been fabulous. However, the past month or so, someone has been waking up crying at various times during the night. The crying is usually brief, but it wakes me up and then I can't go back to sleep. I have been letting them cry, even when it goes on for 15 minutes or more, because what am I going to do? I am certainly not going to get them up to play. I check to make sure they are not sick, wet, or stuck, and if all 3 check out, I go back to bed and put a pillow over my head.

They are getting their 1-year molars. Lucy has all 4 in and Drake is cutting his last one on the bottom. I think that may be why they are waking up. They also seem like they are ready to go from 2 naps to 1. They aren't really napping during their morning nap anymore. So I think they may be over-tired, too. We have just started moving the morning nap 15 minutes later each day, trying to get them to ease into a single early afternoon nap. We'll see how that goes.

But, otherwise, the kids seem to be adjusting to me being gone all day just fine. I don't know whether to feel happy or sad about that! My sister brought them downtown today to meet me for lunch. That was fun and a treat to see them in the middle of the day. We are going to try to do that once a week.

TGIF

Not really sure what to post about, but lots on my mind. I started my new job on Monday. I am completely wiped out from my first week of full-time work. I have been shaking the dust bunnies out of my brain. But, it's been good. I enjoy the people, the work, and the challenge.

The twins have been home with Auntie Hil all week. She has been taking to take Drake to CCS and his other PT/OT appointments. They will be with her 5 days a week for the next 2 weeks, then Hil's classes start and she drops back down to 3 days a week. We just hired a new nanny for the 2 days that Hil has classes. I think we got lucky. I went to Craigslist, found someone who seemed good, interviewed her, and subsequently hired her. She is a young, hippie-type woman, who brings love and organic cooking. Of course, organic cooking isn't a requirement of mine, but why not?! She is also a certified pre-school teacher, has training in massage, and is interested in alternative wellness and therapies. She is very keen on working with Drake and I think she will do even more with him than we do, as she is fresh blood!

Drake just found his mode of mobility last month; rolling! He rolls like crazy now, all over the house. It feels like we worked on rolling for an eternity. First to get him to roll front to back, then back to front, then to link rolls like he does now. He uses his legs to initiate his rolls, which his PT likes. He pulls them up, then moves them to the side. He doesn't use extension to roll, which I have been told can sometimes pose later problems.

At the same time, Drake seems to have plateaued in some areas after a huge progress spurt. He doesn't want to sit anymore, all he wants to do is stretch forward out of sitting and roll! His PT thinks he is just so excited to have found a way to get around, that sitting isn't his priority right now. That makes sense to me, but we are still trying to get him to stay in sitting to strengthen his back, etc. It's hard to do that right now!

Lucy is soooo close to walking! She will let go of furniture for a couple seconds and stand there. Then she realizes she is standing and freaks out and falls. She will take one or two steps unassisted if you hold your arms out to her. I can't believe my little peanut girl is about to walk! I sense a whole new set of challenges coming my way!

Socks suck!

Things have been crazy over here in Oakland. I got offered a full-time job right before the holidays and am starting it tomorrow! I have been searching for the word to explain how I feel. I don't think there is just one. I am excited. I am conflicted. I am heart-broken. I am worried.

I have been home with the twins full-time since July. I will miss them terribly. I was looking at a calendar and counting the days per month I will be with them. 8! Maybe 10 if there are 4 weekends in a month. That is like a third of a year! I am consoled by the fact that they will be with their amazing Auntie Hil 3 days a week. I am in the process of interviewing for another nanny 2 days a week. And I have put them on a wait-list for daycare (a fabulous daycare that takes special needs and typically developing children) because I am thinking of starting them in daycare in June. There are crazy changes ahead, people!

Speaking of crazy changes, Drake has been progressing so well the past 2 months. Tomorrow he is 14 months corrected age. It seems like right around his 1 year birthday, things really started to click for him. First off, he is so much more verbal. He is very involved in oral play, making sounds and blowing raspberries, playing with inflection, etc. There are times I can't tell which twin is "talking" anymore, they are so similar in their range and frequency of babbling.

He has also finally found his feet! I have been using a game I have coined "Socks Suck!" (though I don't call it that to him) to get him to lift his legs to grab his feet and take off his socks. He loves it and is so pleased when he gets a sock off. He claps for himself, as evidenced in this video.

This video was taken a couple weeks ago. Now he barely keeps his socks on, grabs his bare feet and tries to nibble his toes.