Standing Tall

Jake is standing on his own for up to 30 seconds more and more consistently now. That is something he has never been able to do before and I am hopeful that he can improve to a minute, then longer and longer after that. To many people, this may sound so insignificant; but to Jake, to us, and to Kevin (his physical therapist), this is a huge milestone.

He is also getting the idea of putting letters together to form words, not exactly spelling them yet, but conceptually, he understands the idea of putting several letters together to make a word. Jake is also identifying many action words; he not only identifies objects by their names, but also by their functions. For example, when asked “where is the umbrella?” he picks out the picture of umbrella. When asked “what do we use when it is raining?” he can also pick out the picture of umbrella amongst other pictures. While his receptive language seems to be improving, his express language remains severely impaired. For whatever reason, he just can not produce sounds other than “b”, “p”, “m”, “o” and recently he started to make the “f” sounds, but those are all the sounds he can make after 3 ½ years of speech therapy. Well, we can’t have everything, can we?! But Dear GOD, we really do want everything, we really really do...

It is almost Christmas

We went to Boston this past weekend to see some friends I met online. They also have a child with specialneeds, so the bond between us was instantaneous. Jake has really mastered using his chopsticks; he even picks up peas with them. The workers at a Chinese restaurant we went to have dinner at, thought it was hilarious just how focused he was while trying to eat with chopsticks.

It is almost Christmas; Jake’s speech therapists had a party at the office yesterday. At first, I hesitated bring him there because I knew he gets very overwhelmed in crowded settings like that. But I decide to bring him anyways even just for a short time. Melanie, Jake’s new respite worker came with us and she was a great help. Jake was overwhelmed at first, so we took him to a small room just us, and he had his pizza there and read some books. Then we went into the party room where he saw all the kids were coloring, and he did some coloring as well. Shortly after that, Santa arrived! HO HO HO! Jake got presents from his speech therapists and a goody bag from Santa.

Merry Christmas from our family to yours. We wish 2007 will bring more progress, health and good fortune to Jake and all the children like him.

Let's push theose wheels

Here is a picture of Jake when he was 6 months old. You know, the one between the bear and the frog.

This week the weather is exceptionally warm in NY, which is great and I am taking full advantages of it. Here is how: Jake got his new walker about a week ago. I started to have him walk with his walker from our apartment out to the car, which is parked on the street, and also from the car into the apartment. He did great; no complain no whining, just needed occasional help with turning. Today I took it up a notch; I had him to walk with the walker from where I parked on the street all the way into his classroom, which is about 2 city blocks in distance. We did that twice today. He did awesome, just a tiny little complain at the end of the second trip.

I don’t really care when strangers on the streets walk by and look at us, look at Jake walking with his walker, in fact, I am so proud of the fact that he is walking with the walker. I am ecstatic over the fact that he is gaining independence and confidence. Actually, in the past 4 days that we have been practicing walking outdoors, Jake has gotten “thumbs up” from many people; the porter in our building, the school bus drivers and girls that help out on the bus, the classroom aids, his after school speech therapist was ecstatic when she saw Jake walked into her building by himself using the walker.

My mom is coming back from Shanghai at the end of January, I am thinking if Jake can walk from our apartment to hers wouldn’t that save us some gas money? Just kidding.

Chopsticks, chopsticks

This afternoon, Jake ate his snack with “chopsticks”. I know, even snack time is therapy time, poor Jake! Jake’s OT gave him the chopsticks not long ago. As much as he was motivated by the food in front of him, he couldn’t use the chopsticks at all in the beginning, because he had a hard time controlling his fingers.

I practiced with him a few times, and his OT practiced with him a few times. He slowly gained some control but it wasn’t until this afternoon that he interpedently ate with these chopsticks. They are made in Korea and are sold at a Korean supermarket for approximately $4. Apparently, they are common household objects in Korea. But I think whoever invented this is a genius; I hope he/she is rich from the invention.

Hip Hip Hooray......Jake is all better

Jake has finally made a full recovery. As of this week, he resumed all normal activities which include school and therapies.

I can’t believe 2006 is almost over. One of the objectives I had for this year is to look into special needs planning. Basically, I want a plan in place for Jake’s care in case something happens to my husband and I. My husband for one reason or another refuses to even give the matter a thought. I on the other hand, feel very strongly that it is something we must do. Just the other day, this lady driving a huge SUV almost ran into my little Jetta!!!

I have made an appointment for a consultation with a lawyer, but I need to read more and be more educated about the issues before going to the appointment. I admit it is not exactly a fun subject to discuss or read about, however, it has to be done.

Jake got really upset during OT yesterday, and again got really upset with his speech therapist this afternoon, because in an attempt to open his mouth more, she stuck this really nasty tasting therapeutic thing in his mouth. That was the end of the speech session, Jake pushed her hands away again and again, and as soon as he got a hold of my hands, he started to walk out. I think it is a good developmental milestone that he is showing his emotions and dislikes instead of being indifferent, his therapists agree.

Oh, did I mention with regard to the special needs planning, I am considering adding something like in an event something happens to me, my husband is not allow to get married again.... :-)

Can I get som sleep around here?

Jake has been sick for over ten days now. He has been on zithromax (an antibiotic that fights bacteria in the body), prednisolone (is a steroid medicine which reduces swelling and lowers the body's immune response), bromatane (a cough suppressant), tylenol and motrin (reduces fever), and just yesterday, started another antibiotics called augmentin. In addition, he has been on daily xopenex (inhalation solution which relaxes the tightened muscles around the airways in the lungs) and pulmicort (a steroid that prevents the release of substances in the body that cause inflammation).

In summery, he has been so sick, and I am so tired. He missed two weeks of school and therapies which included PT, OT, and Speech. We were supposed to visit some friends in Boston and spend Thanksgiving together, that plan has been utterly and completely thrown out of the window. For most, I hate to see him so miserable like this; secondly, it really holds him back when his routines are interrupted for such an extended period of time. Because it means once he is well, we have to rebuilding his strength, endurance and momentum.

I really try to keep this blog a positive one, but things have been pretty rough around here. I am always looking for inspirations to get through days like today when I feel like I have had it. One major source of inspiration comes from another blog which mostly is about financial investment. However, the author is a 39 years old man with stage 4 colon cancer; he has a son who is 2 ½ years old. Today he wrote “For one reason or another, god has chosen this road for me to travel. And guess what, I will gladly walk this line until I am absolutely down and out. You know me by now - it's not that easy to put me down. And this is all I have to say: " Let's get it on!"

My mysterious boy

Looking at this picture taken just last evening, I wish we can all smile with such innocence.

I discovered last night that Jake can do something really amazing with the letters.

I used to place 4-8 letters in front of him and ask him “where is E, where B, where is X…” and he picks out each letter correctly, and that was how we knew he knew the letters, even though he doesn’t know any colors or shapes. Strange right?

Last night, I changed the game a little bit. I randomly placed 4 letters in front of him, for example, B, O, S, Q, and I asked him “Queens starts with what letter?” He looked at all the letters and picked out Q, and then I asked “Book starts with what letter?” Sure enough he picked up B. Today I gave him one word for each letter, and he got almost all of them correct. The errors he made were with words he has never heard of before.

Get this; my husband asked him “iPod starts with what letter?” Can you believe he picked up letter “I”? I was shocked; he wouldn’t have the slightest idea what an iPod is. Heck, I don’t even have one; I don’t even know how to use one! Do I need one?

The best thing out of all this is the fact that he truly enjoys playing the letter games. Unlike all the other table top activities I do with him, which he looses attention and focus after a few minutes unless I have food as a motivator, and even then he hates them especially stacking or building blocks.

I am not sure what is going on in his little brain, but we will keep working on the letters because they are fun to him.

Wishing up on a Star

The Make - A - Wish Foundation is one of the world’s most well known charities; its mission is to “grant the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.”

A few months ago, I referred Jake to the Make - A - Wish Foundation through its official website, and with the help of his wonderful pediatrician, Jake was approved as a wish child. Today, two wonderful volunteers from the foundation came to visit Jake, in the pouring rain mind you. Once again, this just goes to show the generosity and kindness that exist amongst people, and we are so very grateful to witness and experience that. Indeed, Jake has opened our hearts and eyes to see the best things in life which can not be measured by money or anything else we normally value in life.

The volunteers asked us some questions about Jake, and we had to sign some papers. No big deal, then, they popped the question: “So what is your wish?” They asked us the question since Jake is non-verbal.

My husband and I each had a wish idea. His was to convert one room into an exercise room for Jake, and purchase some exercise equipments that we couldn’t otherwise afford to buy for him. My idea was to bring Jake to Florida to attend a swim with the dolphins program for special needs children. The volunteers were genuinely excited about both of our ideas, and to my surprise, they said that none of the families they visited in the past has ever mentioned either one of our ideas, and they have been doing this for over 15 years. Wow, I guess we are just that original, huhnnnnn. :-)

We will be super excited no matter which wish the Foundation grants for Jake. Not a bad day after all, right? Considering we woke up at 6AM this morning only to find Jake burning up with a 104 fever. He had an easy day after that, his chores for the day were pretty much take naps, or watch TV, or eat and drink.

Please don't let this be an one night thing

Dear God, I hope I am not going to jinx myself by writing this, Please.

I have some amazing good news to share. Tonight for the first time, Jake walked by holding onto one hand only. OK, the walk was not perfect, and it had to be his left hand that was held, not the right, and he couldn’t walk long before he needed a break. But what the heck, he did it! The prize was raisins on the other side of the room, (organic raisins I bought at Wholefoods). He walked back and forth in the room with me holding his left hand several times.

I am very excited, it is totally over shadowing the fact that 50% of the work force in my husband’s department got laid off this afternoon. He dodged the bullet yet once again, but he says that soon, the whole company will be dissolved as a result of merger and reorganization. OK, I am going to be sad and worried about this later, right now, let me just celebrate a major accomplishment by Jake.

I couldn’t take any pictures or video clips, sorry, I was home alone. I have to show it to Kevin (PT) tomorrow. I hope this is not an one night thing, I am not going to write too much because I don’t want to jinx it. :-)

TGIF

Good news to update, I think Jake’s leg is finally getting better. This morning, he was able to walk while pushing his stroller again. He was not limping, well maybe still a little bit, but he was bearing weight much better.

Just as his development seems to improve, he always has some kind of set back. This journey is really a true testament of patience, perseverance, and faith. The picture on the left was taken in Nov. 2005, notice Jake needed a brace all the way up to his waist to maintain an upright position. The picture on the right was taken in Oct 2006, notice how nicely he was standing without any brace. You just have no idea how much work, sweat and tears it took for this little guy to go from left to right! We are very proud of him.

Next week I will attend a Parent Information Meeting for “CPSE Turning Five”. Basically it will be a meeting to inform parents about the transition process from CPSE to Kindergarten for youngsters with special needs. We are not sure which school will best fit Jake’s needs after he turns five years old. Currently, we are considering NUCP (Nassau United Cerebral Palsy). But in order to attend this school, we would need to move to Nassau Long Island. We are currently house hunting in that area, but it is difficult to find a house within our budget that meets Jake’s needs. We need something that doesn’t have too many stairs inside and out; doorways need to be wider in case he needs a wheelchair for indoor use; bathroom needs to be bigger, etc. Isn’t that TV show “Extreme Home Make Over” awesome? Do you think they can build us a house when we don’t have a house? :-)

I ordered a pair of shoes for Jake from Hatchback Co. They sell a type of specialized shoes to wear with AFOs (Ankle Foot Orthodics). I read many good customer feedbacks and decided to buy a pair for Jake. He has worked harder than anyone I know this whole year, and he totally deserves a pair of good shoes that is not 2 sizes larger then his actual size just to fit his AFOs.

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.