Archive for the ‘special needs’ Category

Walker Adventures


Cisco has been using a Riffton miniPacer gait trainer as a walker for about three months. He took to it right away and it has opened up his world. He finally can interact with the world rather then just see it pass by. He wanders the entire house (so happy we decided to move into a single level house this summer). He opens and closes doors and drawers. He empties drawers. He goes up to people (over most the summer, he was very with those outside our immediate family). He’s a different boy. He still likes to get on the floor and belly crawl or stand at his table or other arm level surfaces but he’s happiest in his walker and will spend the day in it if he can between meals and naps.

It has been a transition. First, I had the waist support snug around his chest/waist and he took little steps with the wheels adjusted fairly tight and only able to go straight (the miniPacer is very adjustible). He also didn’t use the handles for a long time. It had lots of straps and such to mess with that he enjoyed. I slowly loosened the waist support over time. One day, I removed a lot of things and he got very upset so I realized even the things he didn’t need needed removed over time for him to transition. He always needs lots of time to adjust to new things. Even his miniPacer was placed in the house a good week before he used it. We are finding he has a lot of sensory sensitivities. Once the waist was as loose as I could make it in the front, he started using the arm rest and handles for support but never tolorated attempts at attaching his arms to the support. After about three weeks of walking around confidently with a loose waist support and even enjoying it a the park a few times (previously we only used the walker at home and he would be antsy and unhappy at the park with mommy and brothers friends), we tried with the waist open.

Today was the first day he walked with the waist support open. He took to it beautifully. We have all hardwood floors over slab, so I recently got him a “baby no bumps” helmet (not a medical helmet). So, glad I did. Great piece of mind as he uses less support for walking. He’s determined to do it on his own and pushed my hand away as I held the walker or tried to offer my help. “I’ve got it mom.”

Click here to see Cisco Using his Walker for the first time

Click here to see Cisco using his walker today

Crawling and Walking and Growing


I’ve been unable to provide an update for awhile as I’ve been too busy keeping up with my little guy as the milestones keep building up all of a sudden. Cisco is doing great. He is now 1.5 years old.

He’s started wearing his glasses all day and it has helped keep his eyes straight as we were starting to see the eyes wonder again this summer. Not much luck with eye therapy though, he’s so busy, he can’t stop much to do the therapy.

Cisco started the commando crawl (where you scoot your belly along the ground). He’s become quite the expert and can make his way from one end of the house to the other. In fact, he spends most his waking day at home on his belly exploring. It has opened up a whole new world for him. He was getting really shy with strangers but that is fading. He’s adventurous and happy.

While he is not talking much at all, he’s a clever little boy. He understands just about everything I say. If He is chewing on a book and I say, “Not for eating,” he’ll put it down and cry as if I’ve internally wounded him beyond repair. If I ask if he want to do something like eat I better be ready to do it right away or he’ll get upset. No idle discussion allowed around here.

We recently visited Cisco’s pediatrician. She was happy with is weight gain. He is following curve but at his own rate like everything else. He’s very small for his size, in like the 1 percentile. She was concerned with is height though. On her chart it looked like he had flat lined the last 6 months but I knew he had grown as things were outgrown and/or fitting differently. So, i did something I had meant to do for months, compare his stats to the newest CDC chart (our doctors office has been using the old ones because they had so many old copies and didn’t think there was much of a difference) which was adopted from the World Health Organization collected from breastfed babies (which makes more since since breastfeeding is the natural form of baby nutrition). While he was still below the curve, he followed it and it looked just fine. It made me feel so much better as I’m a very small woman and so are many of my family members. I’m not allarmed if he is small but I was alarmed if he wasn’t growing at all. What a relief. I convinced our doctor to do the same and she agreed, no need to go to the endocrenologist to investigate a growth hormone issue as she had originally suggested.

I wish I could figure out how to get videos on this blog because I have one on this next milestone: walking with his gait trainer. While Cisco is not walking unassisted, he is now trying out a walker with good success. The first day I put him in it, I said, “I’m going to put you in here so you can learn to walk like mommy and Big Brother.”. I strapped him into the trunk support pads and he started taking steps immediately. It was beautiful. He is now starting to explore the house upright thanks to the gait trainer. I realized last night that it is now time to put padding on the corners of the dining room table and plug protectors in the outlets. My boy is on the go.

Lastly, we visited his physiatrist today. She was happy with his progress with motor skills and we both agreed a great improvement from when we last saw her 6 months ago. She also gave us a DMV form for a 6 month temporary disability tag for the car since Cisco isn’t walking yet. I was starting to feel like we need accommodations in some places and she agreed. She also advised us against using the high top shoes anymore. She said he strenghth in his ankles and legs looked great and the shoes were just adding bulk. I had been noticing he walks in his gait trainer much better barefoot and really was having trouble if we used the high tops. She suggested just a low profile shoe to protect his feet outside as I would like to start taking him out with the gait trainer. We tried it for the first time on the porch yesterday and it went really well.

Early Morning


So occasionally, Cisco decides to wake up early.  This morning he woke up about 6 a.m.  I could feel him get wiggly and tried to ignore it then my eyes opened and there he was on his belly with his head up looking at me(this is big for him as he just finally started moving around and rolling a little in bed).  At that point he insisted we get up.  He played with me for awhile then played on the floor.  Big Brother finally woke up and started chatting with Mommy.  Cisco was complaining a little but not too much so Mommy continued to chat with big brother.  Then, mommy looked over, and this is what she found.  A tired little boy passed out on the floor…

Exploring Food


Cisco loves to fed himself but tended to look at me like I was crazy if I gave him anything sticky or real wet so the speech therapist recommended a sensory meal each day.  I was quickly able to get him to be more adventurous.  I think his hesitation had a lot to do with me mostly giving him breads and other somewhat dry foods he could easily pick up and take a bite without them falling apart.  Here is one of his first sensory meals about a week ago. Now, most of his meals are high sensory. This week he’s eaten, all by hand, oatmeal, quinoa with oil, various foods with sauces that I didn’t pre-rinse like I used to and the list keeps growing. So proud of my little guy.

Many Changes


I haven’t updated my blog in two months because we have just been too busy.  We’ve had changes in Home, Health, Development & School.  

Around the time of the Cisco Kid’s surgery, we decided we should look into the possibility of moving into a more accessible home.  It is unclear when and how well Cisco will be walking and we live in a three level townhouse.  The thought of dealing with the worry of a new walker likely using a wheeled device in this house was really worrying me.  My little guy is growing and improving but at his own pace which means each of the phases that his brother went through in a split second, lasts months for our little Cisco Kid.  I remember when his brother was a baby he enjoyed the baby gym mobile for a month or two while Cisco used his happily until he was one, for example.  This also means that learning to walk will be an arduous process and he can find independance much faster in a home where everything is on one level with a level ground yard (our little yard is far from accessible).  

As I don’t think I’ve mentioned on this blog before, my hubby has multiple sclerosis (MS).  Luckily, he is still good on his feet but mobility is sure to be an issue for him at some point too.  It just wasn’t making sense to stay in our beloved townhouse of 13 years anymore if we could move to something more accessible now.   

After 2 months of looking, we have found what seems like a perfect home in a nice neighborhood.  It isn’t as close to our present house as we were hoping but it has all we wanted: single level living, move in condition, level yard with space to play and garden, and wheelchair accessible, all in our budget.  We are so excited about our new detached house but all a little heartbroken to leave our present house and great neighbors.

We also have exciting health news, my hubby just switch his MS medication from a shot to a pill.  He has been getting shots every other day for over 8 years and really didn’t like it, as you might imagine.  He was so happy when the first MS drug in pill form came on the market and his neurologist said he could switch.  He was ecstatic.  It has only been a few days but so far so good.  He did have an issue with hit making him flush at first but dramatically decreased that by eating well with the pill.  He says he has an odd taste in his mouth and hears a swish in his ears at night but is feeling more energetic.  He had already seen an improvement in energy along with less bad days as a result of starting up tea kwon do in the fall with Big Brother.  I really hope this works well for him.

The Cisco kids eyes are doing well.  They do turn in when he is tired but look pretty aligned most of the time.  His OMA is more obvious now without the crossed eyes but it is pretty mild.  It seems to only cause him issues when he wants to really look at something, particularly at a distance.  At our 6 week follow up, his ophthalmologist said his eyes looked great but cautioned us that they could still cross.  His vision therapist said they were looking good but encourages us to do eye exercises daily and he should wear glasses throughout the day.  I do see his glasses doing well for him but he pulls them off more and more.  I get tired of trying and give up.

Cisco has also continued to struggle with weight gain.  He is very thin and below the growth charts but doing well in height and head circumference.  I fluctuate between being concerned and not worrying because he comes from a long line of very thin people.

The Cisco Kid is growing and improving, now almost 15 months old.  He is standing at his little table grandpa got him for his birthday well and is even pulling himself up and down from a little step stool he uses as a bench.  His PT suggested high top shoes and the all leather Jumping Jack high top baby shoes I got him on Zappos have really helped him in his stability standing up while not having a super rigid sole (I’m usually a big advocate of keeping babies/toddlers shoeless).  He still cannot roll very well and while he sits well unsupported and stands pretty well supported, he is unable to make the transitions for himself.  He is getting increasingly more interested in the world.  He so wants to get to the things he finds interesting and move about on his own as he should be doing developmentally but his little body just doesn’t cooperate.  We ordered him an adapted stroller for special needs kids and the vendor lent us there’s until it comes in.  He loves going for a ride in it.  I’ve asked the PT to see if their supply closet has a walker we can use or some other form of mobility to get our little guy moving as he would like.  He’s also loving My Gym classes.  He has so much fun with the music and circle times, rolling an one of their tumblers, sliding down the not so steep slide on his belly or back, and playing in the ball pit.  I think My Gym has been his best therapy.

Big Brother is doing well too.  He has grown up so much.  He’s almost 7.5.  He’s usually easy to reason with and is generally very helpful with brother.  He gets me things I can’t get to because I’m caring for his brother and is such a great form of entertainment for his little brother in the back seat. He has also greatly improved his skills with self entertainment as we go to doctors appointments and such.  He’s become mister social, striking conversations whenever he can.  He has made good friends with our realtor (who also helped us buy our townhouse pre-children).  Our realtor even came to his recent solo violin recital (I really need to share a video of one of his performances someday soon).  Such a joy to be around except after hanging out a few hours with the neighborhood boys.  Haven’t quite pinpointed the cause.  He too loves My Gym and we try to take him with us to one open gym a week.

Because of the move, we have ended the “school year” a little early but look forward to getting back to school once we settle in the new house.  Big Brother took his end of the year CAT test we use for proof of progress.  I think he did well but we are still awaiting the official results.  We will be continuing to practice for his upcoming violin group concert that is in early June and hope to get in some good reading time as we pack and prepare for moving.  We just finished the first “Harry Potter” and watched the movie this weekend.  He has asked me to read the Hobbit next.  I try to get him to read to his brother regularly but will have to wait to make it a morning routine again after we get to our new house.  I don’t think next year will look horribly different then this but our move will make some other homeschool groups available to us that we too far before, so who knows.  I’m trying not to out much thought into it until we are settled at the new house.

I think that sums up the past couple months.  Sorry it is so long.  I’ll try not to make it so long before my next post.

Eye Surgery Day


Today, the magnificent, the brave and the happy Cisco Kid (aka DS2) had eye surgery to correct his strabismus (his eyes turned in). He handled it bravely. The worst part was post-op. They had him wake up without me before they called me in (after I told them otherwise) and he was screaming crying as a nursed carried him to me (I’m sure he was so scared). Then he nursed so much he threw up. He was very upset screaming until they took out the IV and dad put him in the Ergo.

Our opthamologist is very experienced with this surgery so we opted to stay with this doctor eventhough the Surgical Center he uses does surgeries for babies through adults. Major contrast to our Children’s Hospital experience. Little appreciation for my anxiety. They had 4 waiting rooms for each pre-op phase and dad and big brother (who unexpectedly had to come with us) had to stay in the downstairs lobby. They also wouldn’t let me go to them during the operation for support. Not bad. They did a good job clinically. Just little compassion.

Once we got in the familiar car, he slept happily. After continuing to sleep for awhile, he nursed well and then threw it up again. Luckily after another bit of sleep, I only nursed him 5 minutes and the milk stayed down. I gradually increased the time as he asked and all has been well so far. Around 3 he played in our laps a little, went back to sleep (I napped too as I hadn’t really slept since 3 a.m.). Played in my lap. Slept some more then decided he was pretty much feeling back to normal. He’s been playing happily for about 1.5 hours. Hopefully he’ll be ready for bed soon. I know I am.

Now to wait and work aggressively on eye exercises. The surgery was done so young to give the best probability of success but his brain could still reject the correction and the eyes could cross again. There are some studies that show combining surgery with vision therapy can increase the chance of success (Unfortunately, Opthamologists and Optometrists don’t often play well together to get a better understanding of this). So far his eyes look much straighter and I not even noticing the OMA today (the surgery is not expected to correct that). I’ve been impressed with how well I’ve gotten him to track things this afternoon/evening. The picture above was taken by dad this evening.

Sign Language


Over the holidays we realized DS2 had started signing “milk”. He had done it for probably 10 days before we realized he wasn’t just examining his hand. We were so excited. We had been signing to him for awhile like we did with his brother. They both started signing at the same age. Another hint that cognition seems to be intact. He soon after added the signs for “more” and “Mama”. Yay!

DIY Corner Chair


About a month ago, DS2’s OT recommended we use a corner chair to help him sit up since he still can’t do it unassisted.  They didn’t have any available for me to borrow at the time and they cost $100s to purchase so I made my own out of cardboard and duck tape.  I’ve since glued on the anti-slip fabric used under futons and carpets.  It’s all double layered cardboard from an old shipping box and pizza box on the bottom.  It is stable and has held up well.



DS2 had his MRI Friday.  It was a little scary for mommy as he had to be sedated since the scan takes 45 minutes to an hour and requires you to be completely still.  It was a really long hour for me but once it was all over baby was fine.  He continued to nap for about 30 minutes then woke up slowly.  It took a few minutes to get proper sucking down then he was able to nurse.  After nursing for about 20 minutes he was smiling and looking around.  We were at the hospital for about 3.5 hours total.  He napped a little on the way home and slept well that night.  I was very happy with the care and patience at National Children’s Hospital as usual.

Yesterday, Tuesday, we got the MRI results.  No surprising findings.  No tumor and it isn’t Joubert’s Syndrome as suspected.  His brain stem is smaller then it should be (this area controls vision) and another area is smaller then it should be (controls vision, motor skills and speech).  The nerves to the eyes also appear thinner then they should be.  So, his symptoms of optical apraxia and crossed eyes are not surprising nor is his low lone and physical delays.

This does complicate the opthamologists recommendation to do stabismus surgery to straighten his eyes.  Given the damage in the brain, there is a lower chance of the surgery being successful.  The opto-neurologist said it is worth giving it a try and soon but I’m not convinced.  I’ve got to do some more research and sole searching.

All and all, I feel I’m taking this well.  Not sure what to do next.  The opto-neurologist said there is nothing more  we need to do right now but Occupational and Physical Therapy weekly as we are doing and he’ll probably need speech therapy when he is older.  He also referred us to a geneticist to see if we can identify a genetic link.  He says the abnormality does not look like something that I did wrong or brain damage but rather something that occurred early in the development (first trimester).  For now, I like not having a label, as the opto-neurologist said, the brain is plastic and can adapt/change a lot especially at just 8 months old so we just have to keep working on the symptoms and not “type cast” his future potential.