Happy Halloween!

So we have officially cancelled our Michigan trip. Jake was scheduled to participate in a 3 weeks intensive physical therapy treatment there, but due to his recent injury, we decided it was best to postpone the treatment. Hey, maybe we can use the money to go on a vacation after all!

Today is Halloween; a lot of kids in Jake’s school are dressed up in their cute costumes. Last year, Jake didn’t understand anything about Halloween. This morning, as I was dressing him in his Tiger costume, I explained to him that he is dressing up as Tiger today. I took him to the long mirror so he can see himself head to toe. He was very excited and every time when I asked him “who is Tiger today?” he consistently pointed to himself. So that made me happy the fact that he responded appropriately to the situation. Little things like this make me happy, because they don’t come easy. My sister will never understand my life, because everything comes so easy for her kids; they walked, they talked, they learned things on their own….

I still remember the first time Jake crawled by himself, and I remember the first time he walked with his walker on his own, and I have imagined a million times for the moment when he takes a step on his own. It is so emotional just thinking about that moment, I don’t know what I will do if and when that imaginary moment becomes a reality.

I know, I will probably pass out.

Wheelchair shopping begins

Isn't that cute? Jake enjoys his computer game so much while my husband sings along with his eyes close. LOL.

Today there was no school because it was Parent-Teacher Day. Jake and I went in and spoke with his special education teacher, PT, OT and SP therapists.

Jake’s PT and OT advised me that I might need to look into getting Jake’s wheel chair, because his special needs stroller may not be allowed to go on the school bus next year, even though it is a crash tested version, which means he will need a wheelchair. So naturally, I am turning to my best friend www.google.com to learn about wheel chair options. I am mainly looking for a pediatric wheel chair what is light weight, and allows the child to propel the wheels independently. Since Jake has full functions in his arms and hands, I want him to learn to propel the wheels. Anything that promotes independence I am all for it, even if it is in a wheel chair.

Well, during the one on one meeting with his special education teacher this morning, Jake identified all of his letters. He was very proud of himself and I bet his teacher was surprised that he knew his letters. It is important for me to communicate to his teachers and therapists what he is able to do, because I want them to see his potentials despite of his multiple disabilities, and in recognizing his potentials that they expect more from him.

When others expect more from him, I expect more from myself to help him to achieve more. It is a very positive as well as necessary cycle for Jake’s development I think.

I also found out that Jake speech therapist reads this blog, so I better not saying anything bad about her. (hi Susan!!!) I want to thank you for your advise. I tried many times today to have Jake look at me when he requested for things, and he did very well most of the time!

A new language?

So we are officially delaying our Michigan trip for a week, just so we can give Jake more time to recover from his injury. If he is still not fully recovered a week from now, we will have no choice but cancel the whole trip.

Today, Jake’s OT did some gentle massage, stretching and cranial sacral work on his entire left leg, I want to say that he was bearing weight a little better after that. But it is too soon to sing the happy song at this time. We go back to see her tomorrow night for more massaging and cranial work. She apologized a zillion times for what happened, but the truth of the matter is she doesn’t really know what happened or how it happened. Only if Jake could talk, then the “mystery” can be solved. But then again, if he could talk, a lot of other things can be solved as well.

I was just thinking I am so grateful to the internet. When we first realized the severity of Jake’s medical issues, what saved me was the internet. I spent hours upon hours researching about hypotonia, about dandy walker, about CP, about anything and everything related to his conditions. I’ve also connected with so many parents around the globe and exchanged valuable information. I have formed great friendships with women some I have never met, yet I feel like most of the times, they understand me better than my own family does. To me, being a member of the special needs community is almost like being in a “virtual” society, except none of us chose to be in it, but once you are in it for whatever reason, you learned a whole new way of life, a new perspective on people and things, even a new language. I mean how many of you out there know what is hypotonia, what is dandy walker, what is cranial sacral, if you don’t live in my “society”. While I am at it, what is an IEP, what is EI, CPSE, CSE? I told you, a whole new language. But ask any of my good friends in Atlanta, Michigan, New Jersey, Illinois, and Minnesota, they can explain the terminologies better than I can.

OK, let me stop rambling about nothing.

A little set back

Warning, this isn’t going to be a “positive” update, although I will try to be as positive as I can under the circumstance. (By the way, that is suppose to be a picture showing me being frustrated).

This past Friday afternoon, Jake had his OT (occupational therapy) session as usual. Unfortunately, he was injured. I stepped outside of the building to answer a phone call, and when I came back, he was sitting on the floor apparently upset. The OT and I both thought he was upset because she had got him off the swing (one of his favorite activities). I got him off the floor and tried to walk him to the table like we always did, but he clearly was in pain and couldn’t even make one step. The OT then told me after she got him off the swing, she proceeded to turn him around and he started to cry. We ended the session early because he was just not himself.

We came home and Jake took a nap, I was hoping that by the time he woke up, whatever pain he had would have subsided. But he woke up and he still couldn’t bear any weight on his left leg. I called his PT (physical therapist) Kevin, whom I really trust when it comes to Jake related issues. He came over after work and thoroughly checked Jake. There is no apparent swelling, redness or bruising, he is able to sit, crawl, and make transitions on the floor, and Kevin thought it is unlikely that he broke anything. We think he twisted his left knee somehow. Kevin recommended that we let Jake rest, no weight bearing, and ice the knee (although there is no swelling).

It is Monday morning, Jake is still unable to weight bear on the left side, although I WANT to believe he is willing a little bit more compare to Friday, which is a good sign that the pain is lessening. We are scheduled to leave for our Michigan trip in less than 5 days, and at this point, we are not sure if he can go and participate in the intensive therapy.

He was walking and standing so well before this past Friday, now he won’t even put his foot down. We’ve already paid for airline tickets, hotels, and what if we can’t go? OK, how can I be positive under this situation? Be patient, I tell myself, having a child with special needs is like running a marathon, I must be able to adapt to changes and unforeseen circumstances, and pray, pray a lot.

Did he really stand by himself?

well, I am almost 100% certain that Jake stood by himself for 3 seconds today. It happened at his speech therapist’s office. We were waiting for the therapist to get ready, and I had him stand and told him to show Irene and Maria that he can stand by himself, and then he did, for like 3 seconds. Irene saw it but Maria missed it.

OK, then when we got to his physical therapist, Kevin’s office, the first thing out of my mouth was “guess what, Jake really stood by himself for 3 seconds today, let him show you.” I can tell, Kevin was excited about the news as well. Then nothing, Jake didn’t hold the standing position. Come on, I am thinking to myself, out of all the people, Jake, you’ve got to show Kevin something, he works so hard with you!

Anyways, maybe he will tomorrow. For the first time in a long time, I am really hopeful that Jake will stand by himself. To me, he must be able to stand independently if he has any chance of walking independently. Maybe I am still hoping for the impossible, but hey, it is better to have hope than not.

Dedicated to little Kevin

I just received very sad news, a little boy in Jake’s school passed away this afternoon around 1:30pm. His name is Kevin, and he is 4 years old. I have seen Kevin many times in school. I have stroked his hair, and touched his face, because he was such a cute little boy that I could hardly resist not to.

Just seven days ago, Kevin was going to school, working with his therapists, riding on the school bus; but this afternoon, Kevin left his family and became an angel in heaven.

My heart felt condolences go out to Kevin’s family. From one family with a special needs child to another, I can relate to the heartaches and challenges they have had to deal with related to Kevin’s needs, but I can not even for one minute, imagine the pain and the suffering they must feel at this moment.

I wonder why did Kevin come into this world only to leave so soon. Well, people say everything happens for a reason, and I believe that, even though most of the time, I don’t know what the reasons are. But I do know that little Kevin has touched my life, and the lives of many others, and we will miss him. In heaven, Kevin will run around, sing and play all day long, and then sleep like a baby when he is all done with his day.

Bear Mountain State Park

Today we went to Bear Mountain State Park. It is about 40 miles north of New York City. Jake has a cold so I am not sure if it was the right decision we made to go there today, if my mom was here, she would probably say no. But we stayed home all day yesterday because he was sick, and today we just had to get out of the apartment to get some fresh air.

It was a really nice day; the sun was out most of the times. We walked along the river bank, saw lots of geese, and took some pictures. Jake even got to ride the in door Merry Go Around with daddy. In the end, we took the scenic route and drove up to the top of the mountain and took some more picture.

One the way home, Jake didn’t sound too good, he was very congested but hopefully he will get over this cold quickly. Even though he still gets sick very easily, I have noticed that along with his physical improvement, his immune system has also gotten stronger. He used to “live” on his Nebulizer Machine, now we use it much less. I hope one day I can get rid of this thing for good.

Get me off the treadmill

Here is a picture of Jake during yesterday's physical therapy session with his favorite therapist, Kevin. (The BEST therapist ever).

Jake is almost able to transition from a sitting to a standing position without any support. I know it sounds like something so insignificant to a person without physical disability. But you just have no idea how much muscles and brain work it takes for your body to go from sitting to standing.

Yesterday when Jake was practicing his walking on the treadmill, after about 6 minus, he decided that he had walked enough. He proceeded to turn himself around to get off the treadmill while the machine was still on. However, he couldn’t turn himself 180 degrees, he only got to 90 degrees, and he ended side stepping on the treadmill while holding onto the side bar. It was really funny to see him problem solving and trying to keep up with the speed while walking side ways, which again it is something very difficult for him to do.

Our Michigan trip is coming up. Vacation? You ask. Not exactly. Jake is going to participate in a 3 weeks intensive physical therapy program at the Pediatric Fitness Center in Keego Harbor Michigan. This will be our third treatment session there in one year.

My husband is really good at planning the logistics whenever we take a trip anywhere. He maps out routes, books all the hotels in advance, and even gets directions to nearby restaurants, supermarkets and other points of interest. He is really good at planning when it comes to this type of things, however, remembering what I ask him to bring home after work is …. Let’s just say not one of his stronger points.

The intensive suit therapy program has really helped Jake a great deal in terms of strengthening his weak muscles, and improving his endurance. Because in the past, all of his physical therapy sessions have been no more than 30 minus each time. But when you do suit therapy, each session lasts 3 hours long, and you do it 5 days a week for 3 weeks straight. I remember our first time there, Jake cried everyday for the entire 3 weeks, because he wasn’t use to those types of exercises and intensity. Now he is a pro at it!

New York Aquarium

Today is Columbus Day, Jake doesn't have school. My friend Julie and I made plans to take the boys to New York Aquarium. She has 2 boys, age 5 and 3, and Jake is 4, so together we have 3, 4 and 5.

It is a very nice day, so warm that kids are running around in tan tops. I wouldn’t dare let Jake wear anything less than a long sleev shirt, because he gets sick so easily. As a matter fact, I think he is coming down with a cold as we speak.

Anyways, I feel like I have “grown” a lot in the past 3 years. I remember there were times when I couldn’t even take Jake to the park. I literally had melt downs seeing other kids running and laughing in the playground. It always took so much effort to motivate myself to take Jake to the park, because the grief I felt inside was just unbearable. It wasn’t just the playground; there was the mall, IKEA, restaurants, friend’s children, TV, kids are everywhere if you haven’t noticed. I just wanted to hide from everyone and live in my own Jake’s world.

But today there were lots and lots of children running around in the Aquarium, and there were my friend’s two boys. They were just having a ball seeing all kinds of fish. Well, I guess there will always be something in my heart that aches for Jake, but for the most part, I was content that Jake was pointing to the fish, sharks, and stingrays in the tanks. He kept on bothering the 5 year old by pulling on his hair, and shirt, and just giggling like crazy.

I don’t think I am there yet, but I think I am closer to finding acceptance and peace. Now, I just need to go on a vacation!

Happy Birthday

Today is my husband's birthday. Happy Birthday, honey.

So we haven’t taken too many vacations since most of our trips have been “therapy” trips. Here is a picture taken when we were in Hainan Island. Boy, do I wish we are there right now.

I have to admit with guilt, that almost all of my energy goes into Jake's therapies, Jake's needs, and everything and anything that is Jake related, to a point that I don't do anything special for my husband, or for myself. If anything, I am always complaining that my husband isn't involved enough in Jake's care. My mother always takes my husband's side when I complain, and at that moment, I was annoyed that she wasn't on my side. But the truth is my mother is right. I have a wonderful husband, who is a loving father to Jake, and he is a great son to his parents and mine.

Everyone must have very special moments with their spouses. For me, there are many as well, but the one that is on the top of the list happened in the hospital. During one of Jake’ surgeries, we were in the pre-operation room. Jake was lying there looking very lost in that big and impersonal hospital bed. I saw my husband bent down and gently stroked Jake’s hair, he gave him a kiss and said “daddy loves you”. Poor Jake, he had no idea he was about to go under the knifes, but I know he felt safe knowing his daddy was right there by his side.

Let's see...................

Let' s me just do an inventory of a list of things, because the list is getting so long I can't even keep track of them myself:

• Number of specialists Jake have seen in the past 4 years:

• Pediatrician - 3
• Neurologist - 5
• Orthopedics - 4
• Genetics - 1
• Audiologist - 1
• ENT - 1
• Dentist - 4
• Osteopathic doctor - 2
• Allergy/Immunologist – 1
• Ophthalmologist – 2
• Number of hospitalizations　-4 (I think)

• Types of therapies Jake has done or continues to receive :

• Physical Therapy
• Occupational Therapy
• Speech Therapy
• Aquatic Therapy
• Hippotherapy
• Intensive Suit Therapy
• Conductive Education
• Therapeutic Listening therapy
• Osteopathic Manipulation
• Sensory Integration and Learning

*** OK, I am not going to list the number of therapists who have worked with Jake, let's just say the saying "It takes a village to raise a child" really applies here!

• Types of adaptive equipment Jake uses for various activities:

• AFO - Ankle Foot Orthotics
• Walker
• Stander
• Tripod Canes
• Augmentative Communication Device
• Special Needs Car seat
• Special Needs Stroller

Looking over the list, it seems so sad that our sweet child needs all of these devices and therapies and specialists, but again, I remind myself to look at the positives, and find inspirations.

In the past four years while there have been so many challenges and heartaches, we have also met some of the kindest and loving people. While almost daily, I see hatred and evil on the evening news, but through the innocence of Jake, I been able to see, and experience the goodness, and kindness of so many people. For that, I am very grateful.

Check out some of the stuff we have at home:

A, B, Cs

So I finally decided to start a blog, I am calling it “Follow Jake”, because the blog will mainly be used as a tool to keep track of Jake's progress.

The latest and the biggest news as of Oct 3rd, 2006, is that Jake recognizes all 26 letters. We are very excited and proud of his latest accomplishment. I started to imagine and actually believe the possibility of him reading and writing in the future. I even went to Toysrus this morning, and bought him a leapfrog toy that teaches kids how to spell 3 letter words. I know, I am jumping a little bit ahead of myself there.

For those who don’t know Jake, he is an adorable 4 years old boy with a neurological disorder called Dandy Walker Variant. The disability level with patients who suffer from this disorder varies from very mild to very severe. I suppose Jake falls somewhere in the middle.

But with this blog, I really want to focus on what he can do, and not what he can not. I want to remind myself to look beyond his disability, and focus on his ability.

It hasn’t been easy for me to reach this point. I have spent many hours crying over the lost of “what was suppose to be”, and I have asked God a million times “why me, why us, why Jake.” I have tried to drink a whole glass of wine (I don’t drink at all, I have no tolerance for any amount of alcohol), just so that for even a few seconds, I could numb myself of the pain I felt inside. I really envy those who can get drunk and forget about their troubles for a few hours, but that didn’t work for me. Slowly, I came to the realization that I needed to find strength within myself if I want to smile again.

So this is the beginning of “Follow Jake”. Focusing on ability, not disability.