Tuesday, December 29, 2009

Max reaches a milestone

and why am I blogging about it? Because after having Jake, I don't take any of the milestones for granted. One day I was at a kids' birthday party (and this was before Max was born, in fact, I wasn't even pregnant with him at the time), I over heard someone made a comment about his daughter and kids in general :" one morning you wake up, she is crawling, a few weeks later, she is walking and talking..." I remember so vividly thinking to myself :" not all of us are so lucky..." I am not saying my friend's husband was taking anything for granted, I am just explaining why it is so special for me to see Max growing and reaching his milestones naturally. Max has brought alot of joy and normalcy into our lives, and I feel much better knowing that Jake will have a brother who will love him and help him in the days ahead.

OK, back to the actual milestone, Max has been doing this for the past few days, Then this morning, he started doing this:

Then late this evening when most babies are probably sleeping, he was doing this: But of course no one actually saw the progress in motion, because i was in the shower, and my husband who was suppose to be on baby watch duty, apparently went out of the room (which I had specifically told him not to do). He only found Max at this position.

I am off to bed, I was so tired earlier that I took a 3 hour nap, a rare treat.

Sunday, December 27, 2009

Holiday Greetings

Happy New Year! May all of your dreams come true!



Wednesday, December 09, 2009

Long Island Park for Special needs children

A friend of ours forwarded us this link http://www.nassaucountyny.gov/agencies/CountyExecutive/NewsRelease/2009/10-09-09.html. The article talks about Let All the Children Play Foundation (LATCPF), a not-for-profit charitable foundation that promotes inclusion of children with disabilities and their able-bodied peers is building a state-of-the-art two acre universally accessible park and playground at Eisenhower Park, East Meadow, NY. The park will offer inclusive play opportunities and challenges for all children, including adapted structures, ramps and swings, as well as accommodations for parents with disabilities, including accessible parking, washroom facilities, pathways, and seating.
For those of you who live in this area, the playground is expected to be completed by summer of 2010.

I remember it like it was yesterday one of the most painful memories I have related to dealing with Jake's disability was walking by neighborhood parks. I heard children laughing, I saw children running free like birds, and parents sitting on the benches chit chating with each other, or just looking at their children playing. But here I was, pushing a child in his stroller who was unable to walk, talk, relate to his surroundings, let alone play in the playground. I avoided walking by the parks as much as I can, but then Jake's therapists were always telling me, "take him to the park, let him watch other children play, maybe he will want to follow..." So holding back tears I took Jake to the playgrounds as often as I could. The only thing he could do at the time was sit in those baby swings, and as I pushed him on the swings, i tried my hardest to block the happy images and the sounds around me, but still, almost every single time, I walk away from the park with tears rolling down my face. I remember it like it was yesterday.

Fast forward to today, seven years later I am no longer as sensitive and I am able to take Jake to the playgrounds without having a meltdown. But still parks and playgrounds aren't my favorite places to take him because there, it is so obvious that he is different, that he is disabled, that he can't play the way his able bodied peers can...it is there I am forced to face the reality that instead of planning what college my child will go to, and dream of how many children he will have, we must plan out who will be his care giver when we can no longer care for him.

Ok, so after all of these sentimental looking back moments, I am really looking forward to this park being open. A place where children like Jake can play on adapted swings, and walk with their walkers/wheelchairs on ramps, and where parents like us can take our children to without feeling so alone.

So it is date, we will see you at the park...hopefully they don't run out of funds in the middle of the project!

Saturday, December 05, 2009

Great play date

Today one of my husband’s co-worker came over with his wife and two daughters, and it turned out to be a GREAT play date for Jake. The girls were age 2 ½ and 5, and both were a bit shy. In the past, most of the children who came in contact with Jake were either too active for him, which left him unable to keep up; or they also could not engage in group play, which made it very difficult to facilitate interactive play. But these two girls were perfect play mates for Jake - they liked table top games such as puzzles, stickers, finger painting, simply board games, which are all the things Jake is familiar with, and can participate in, AND they were so patient which allowed Jake to take his time to do his part.

The kids did a lot of activities together with parents’ help, because not only Jake needed help, the 2 ½ year old also needed some help. Particularly, they kids played the Brown bear Brown bear What Do You See board game, where the players needed to match the animal cards. Jake actually played the entire game from beginning to end with some help. He did so well waiting for his turn, and matched the cards on his own. The only thing he didn’t get is the whole idea that whomever matched all the cards first wins the game, but other than that, he did well.
They also played the Let’s Go Fish game. Again Jake surprised us by his persistence to catch the fish, and he actually did catch a few all by himself. His fine motor has really improved even beyond my expectation. But most of all, it was evident that his social skills and his desire to play in a group setting have improved significantly. The kids also did many other activities that Jake attempted to do but didn’t do too well, such as bean bag tossing, finger painting, play dough, and this other shape board game which was really quiet complicated. But all and all, we were so impressed by Jake, as he held his own and demonstrated his abilities and happy attitudes.

Go Jake! Mommy and Daddy are so proud of you!

Wednesday, November 25, 2009

Home Sweet Home

Can you believe another month has gone by since I last updated?! I can’t.

OK so, we were in Michigan for 3 weeks in November for Jake’s intensive therapy. Max came with us so we can officially say, Max has traveled through the states of NY, NJ, PA, Ohio, and MI. But I am so glad to be home and sleep on my own bed. Jake is back in school so we are back to our routine.

I was very conservative and cautious this time, and asked the PT to not push Jake to the extreme in fear of Jake having issues with his right knee, as it happened the last 2 times when we went for intensive therapy. He ended up injuring his right knee and not be able to weight bear for 5 weeks after. So the good news is that Jake did make it through the 3 weeks injury free. But on the other hand, I don’t feel like he made a significant amount of progress at the end of the session because we went easy on him. He is walking a little better during PT with slower and better gait, so hopefully that will continue to improve over time.

I am on hold with the wheel chair dealer at this very moment, it seems as though no one knows right now as to the whereabouts of the stroller. I was told by the dealer 2 weeks ago that Convaid is repairing the stroller under warranty and I was to expect the stroller to be back at the dealer’s shop this week, but so far the stroller is not there yet. As long as the chair is repaired under warranty, I am OK if it gets here a few days later. Hey, better yet if they loose it in transit, maybe they can give Jake a new stroller… wishful thinking, I know.

Max is doing well, holding his head up and all, but I got a little worried when I saw another little boy who is 3 days older than Max, and it seemed that that little boy has even better head control and better muscle tone, so then I was all worried if there is some issues with Max. When will my fear subside?

By the way, I am still on hold while the dealer is trying to call Convaid to locate the chair!?



Friday, October 30, 2009

stroller update

So of course the repair of the Convaid stroller is a hassle. I mean why should anything be easy. It is currently being returned to Convaid which is located in CA through one of its local dealers, who is charging me $90 to ship it there. Upon arriving, Convaid’s inspection people will determine whether or not the damage is under warranty, if it is, happy ending – they will fix it and return the stroller to me free of charge; if it is not – they will quote the dealer who then in return will quote me with a huge mark up I am sure, at which point I have to decide whether or not I will authorize the repair.

We are getting ready for our annual pilgrimage to Michigan for Jake’s three weeks intensive physical therapy. I haven’t mention it because I don’t want to jinx it before we leave. Hopefully Jake will make great progress this time. Hey maybe he will be able to walk so well that he won’t need the Convaid stroller anymore…yeah…I can always hope and dream right?!

Max’s head control is better, but still not 100% steady. He is going to be 3 month old on Nov. 6th, at which time we will be in Michigan of course. This is going to be his first road trip, I hope he takes the opportunity and get lots of beauty sleep during the trip.

Monday, October 26, 2009

another month has gone by

I can’t believe another month has gone by since I last updated. Jake is doing well and Max is growing like crazy, he is already wearing 6 - 9 months clothes and he is not yet 3 months old.

Jake’s convaid stroller is not holding up as well as it should. I am trying to get in touch with Convaid and hopefully a local dealer can fix it without costing us an arm and a leg. But nothing is easy when it comes to special needs equipments, so I am expecting a long, drown out process ahead. Luckily Jake does have a wheel chair he can use for the school bus, the only problem is the wheel chair does not fit in my car if I need to take him to or pick him up from school. Well, there will always be a solution somewhere, so we will see how this thing unfolds.

I have to stop now because it is kind of hard to type with one hand while holding a very heavy baby in the other hand.



Saturday, September 26, 2009

Oh my god

I don’t have a lot of time to write right now, but I really want to give an awesome update.

OK, it probably was a fluke and it probably will not happen again for a long long time, but tonight Jake did something he has never done before. While sitting at the kitchen table, Jake had his communicate device in front of him, first he asked to play with his letter puzzle, ok fine, I gave it to him. After a few minutes of playing, he started to get up from his chair, so I asked him “where are you going?” Using his device he said “go bathroom.” I said “where?” He said “bathroom.” My husband then proceeded to take him to the bathroom, guess what happened next?? He actually peed in the toilet. (He pees in the toilet all the time, but has never actually asked to go to the bathroom, see that is where the big deal of the year is!) OK, most likely it was all a coincident, but still we praised him and praised him and praised him some more for communicating! Later I went upstairs to feed Max, sometimes later my husband brought Jake upstairs, and said “guess where Jake said he wanted to go?” I said “where?” my husband said “he said upstairs.” OK again, OMG!

I will write more next week because I have something great about Jake I need to update, but I don’t have time right now.

Here is a picture of Max from today that I just have to share, ok I admit, Jake is getting the short end of the stick when it comes to getting pictures taken. But Max is just a baby.....

Wednesday, September 16, 2009

Back 2 school

Time really flies, Jake has been back to school for a week already, and Max is almost 6 weeks old.

I have been looking for a speech therapist for Jake since the beginning of August, and so far we haven’t found anyone. There was one therapist who called and we spoke in length about Jake’s speech needs. But then she called me a few days later and advised me that after further consideration, she decided not to take Jake’s case. Perhaps I had scared her off? LOL I don’t know, but hey, I ‘d rather be honest and up front about Jake’s significant language delay than to have a therapist accept the case and only to find out he/she is not experienced enough to treat Jake. That would be a waste of everyone’s time and money in my opinion.

I haven’t been getting too many hours of sleep at night because of Max, so how I am still walking around during the day and being coherent is beyond me. Many people ask me how is Jake with the baby, and I have to say he is pretty good. He certainly acknowledges Max’s presence but he doesn’t demand attention if I have to attend to Max instead of him.



On the weekend, I am slacking off a bit in terms of working with Jake whether it be walking or using his computer, for that I feel extremely guilty. But I am sure Jake doesn’t mind it, he is just as happy if not happier sitting there watching TV or listening to his music, or doing nothing for that matter, that is Jake for you.

OK, now a little about Max. I have been placing him on his belly daily for a few seconds so he can strengthen his neck muscle… oh yeah a funny story on that. On the day that Max was being discharged from hospital after he was born, the doctor came in with some residents to do a discharge exam I guess. I asked her how is Max’s muscle tone, and that were there any sign of him being hyper or hypotonic. The doctor just looked at me, and looked back at the residents with this puzzled look. I guess not everyday she sees parents who ask this questions. OK, it is not that funny right now, but at the time, the expression on her face was pretty funny.

Monday, August 31, 2009

Jake and Max update

Jake is into the 3rd and final week of no school. During this time period, I wasn’t able to spend that much time with him because of the baby, but luckily, Melanie, his lone time respite carer comes in everyday and dedicates every minute of her working hours to his one on one care. Prior to the start of vacation, I made up an activity list and a daily schedule sheet for Melanie and Jake. Everyday, Melanie picks from the list which includes various PT, OT, and computer learning activities; she logs them on the daily schedule sheet as Jake does them. This is so that Jake’s days can be structured and he gets a chance to review all the activities/basic concepts.


Last week was an eventful week for Max, as he was hospitalized for 3 days. We found him with a 101.5 fever on Sunday morning, and off to the ER we went. We ended in the ER for 10 hours as they needed to collect urine, blood, spinal fluid from him in order to grow cultures to check for any bacteria infections. They also needed to put in an IV to administer antibiotics in case he did have bacteria infections. We were told that is the protocol for any infants who have fever above 100.4. After 10 hours in the ER, we were admitted to the floor, there he was getting antibiotics every 6 hours as he was being treated as if he had infection until the 48 hour culture report indicates otherwise. Luckily after 48 hours, none of the cultures showed anything, and we were discharged at around 8pm on Tuesday evening. It was so hard seeing him being stuck so many times by no less than 10 doctors/nurses/residents in the ER all trying to get the specimens and place the IV. I mean it was horrible, why can’t they just send in the best person in the first place rather than have 10 people try and try and fail. In the end, it was the attending ER physician who placed the IV and got the spinal tab, but that wasn’t done until 5 nurses, 1 fellow, 1 resident tried and failed. It was another doctor of NICU who finally drew blood from him after god knows how many people before her tried and failed. Anyhow, finally on Thursday, Max was fever free and since coming home, I have been limiting direct contact between him and Jake, and also having no visitors to see him since we still don’t how he got sick in the first place. That is for now, here is a picture of Max in the ER, poor baby, and another one after a bath.

Wednesday, August 12, 2009

Jake's baby brother is home

Jake’s baby brother Maxim Kai Li was born on 8/6/09, at 8:38am, birth weight was 9lbs 2.6ozs, and he was 20 ½ inches long.

As soon as I got a good look at Max, I thought right away that he looked a lot like Jake when Jake was a baby. Take a look at their pictures side by side:




Max is a really good baby so far, he eats and sleeps and rarely fusses. Jake still has school this week, so Max and I have been spending some alone time during the day. I also find nursing Max at night is very relaxing for me because for some reason, when Jake is at home, I feel a little guilty if I am not able to pay as much attention to him as I used to. I know Jake doesn’t mind it since someone is always with him to keep him occupied and safe, so it is just me. But when Jake is in school and in the middle of the night, I feel that guilt subside and I can fully enjoy my time with Max. I am not sure how long I will feel this way and I don’t know if it is healthy to feel this way, but right now it is what it is. Here are some pictures of Max.


Sunday, August 02, 2009

Jake, baby, and lily

Jake has been riding his tricycle every weekend, and going swimming at the YMCA once a week as well. Jake is doing well in both, making little but steady improvements. I wish I have photos to post but I haven’t taken any lately. There are 2 weeks of summer school left, and I am picking my brain to find activities to keep him busy while he vacations at home.

The other big news is my scheduled c-section is coming up in 3 days, August 6th is the day that Jake will finally have a baby brother, whose name is yet to be decided.

Wish us luck!

I planted some lilies back in May in the front of our house, and they are blooming so beautifully.



Sunday, July 12, 2009

Jake's new tricycle

Finally, with some miner adjustments, Jake’s new tricycle is ready to hit the road! Here are some pictures of Jake trying it out for the first time.


Thursday, June 11, 2009

Jake turns 7

So Jake had another birthday on 6/10, he is now officially 7 years old. Wow, I can’t believe he is 7 already. This year we didn’t have a birthday party for Jake, I am too tired. It is really sad that Jake doesn’t even care or know the concept of wanting to have a birthday party like any other 7 year old would, although he does enjoy hearing everyone sing the happy birthday song. Anyways, I don’t really want to dwell on the sad points of having a child with significant developmental disabilities. Yeah, that is what 7 years will do to you: you learn to roll back tears and keep on keeping on!

We did have a small birthday party at his school on Jake’s birthday. Two “major improvements” to speak of were one: Jake willingly wore his birthday crown during his party, which was something he was never able to tolerate before, and two: he was actually interested in opening his birthday gift, although technically, he was more interested in taking off the stickers that were on the wrapper. As usual, he enjoyed the cake, his favorite part I am sure. Here are some pictures of Jake in school on his birthday.





For Jake’s birthday, we decided to buy him an adapted tricycle. For two years now, we have wanted to get him a Freedom Concept Tricycle, but it is just so expensive. A new one costs anywhere between $3K - $4K, even a used one still costs approx. $2600. Finally, a friend of mine emailed me a link for another tricycle that has the features Jake needs. It is called the Micah and finally I ordered it today. The bike will be shipped to our neighborhood bike shop for assembly, because from what I understand, it needs certain level of expertise in bike assembly to put this thing together, and I have negative expertise, and my husband is not that much better I am afraid to say. The good thing is the bike place where I am buying the tricycle from will reimburse us the assembly fee so we thought that is really the best way to ensure Jake gets a properly assembled tricycle in the least amount of time frame. When the tricycle is ready and the weather is nice on the weekends, my husband will take Jake out to ride it, it will be a nice form of exercise for him, I mean FUN..... you know therapy is never far from my mind.

Tuesday, May 26, 2009

Hershey Park 2009

We went to Hershey Park over the Memorial weekend with my sister’s family. We got there on Saturday afternoon around 3pm and our first destination was Hershey Chocolate World. We took a tour and bought some yummy chocolates there. From there, we went to the hotel to check in and rested a bit. There was a huge swimming pool in the hotel so some of us went for a fun swim. Jake didn’t go because I didn’t anticipate him swimming so I didn’t pack a bathing suit for him. That was a missed opportunity for fun, and next time I will remember to pack it for him. Then we went to dinner and in the evening, my husband, my brother-in-law, my niece and nephew went to Hershey Park and started their evening fun. My sister, Jake and I went back to the hotel because by then it was already almost 8pm, and I wanted Jake to keep his routine, get a good night sleep so he can fully enjoy Sunday in the park.

We got to the park right round the time it opened on Sunday Morning. Jake got a special yellow wrist band which was used to identify people who needed handicap access to the rides. It was very helpful though out the day as he didn’t need to wait in lines and he was able to sit on his stroller for some of the rides. We were surprised that the park was much less crawled than we had anticipated being that it was the Memorial Day weekend, but hey, we can’t complain about that. Jake went on some of the kiddie rides himself, and my sister or my husband took turn to ride with him on some of the bigger rides. Sometimes Jake looked nervous when the rides first started, and always grabbed on the hand bars around him with very tight grips. Hey, safety awareness is always good, right?! Jake had fun, we all had fun. It was great that my sister was there to help with Jake since I couldn't go on any of the rides with him, so I wasn't too stressed out about Jake not going on enough rides because my husband was just excited about going off to big rides with my niece and nephew. Below are some pictures of Jake in the park.



Wednesday, May 20, 2009

DJ Jake


Jake’s class performed a dance called Shape Inc. at the school assembly this morning. Jake was the DJ (DJ Jake), and he introduced the shapes by using a Dynavox (a voice output augmentative communication device) as his classmates came out dancing according to the shapes they represented. The dance was performed for the general education students in the same building, and those kids loved it. They clapped and cheered on, it was great. I thought his teacher Rob gave Jake a very appropriate role in the performance. Instead of have him walk out with his walker as one of the shapes, I think Jake was able to comprehend and connect more to the whole performance by doing what he enjoys more, which is using his communication device.

I was in a rush to get to school on time for the performance, I forgot to take a camera with me, so attached is a picture from his teacher.


Jake also went to a wedding earlier this month. One of his speech therapists invited us to attend her wedding ceremony at the church and Jake had the task of bring up the gifts to the father. I don’t have a picture of Jake walking to bring up the gifts because I was walking along side of him, but here is a picture of Jake walking into the church before the ceremony started.

Monday, April 27, 2009

trips during April

When I wasn’t feeling well during the past few months and also because of the cold weather, Jake didn’t really get to go anywhere on the weekends other than to grandma’s house. After a few months of hibernation, we finally started taking Jake out on the weekends in April.

Let’s see, we went to the Science Museum in Queens earlier during the month. While some of the more complicated stations were not big hits with him, Jake was into some of the hands on stations which was nice to see. Here is a picture of Jake “unbuilding” something at one of the stations.

During Easter weekend, we also went to Potomac Park in Washington DC, it was a beautiful day and Jake got to ride a pedal boat with Daddy, cousin Michael and cousin Cynthia.
The next day, we all went to Luray Caverns, which is located in Luray, VA, the caverns were first discovered in 1878, and every inch of the formation takes 120 years. Amazing, isn’t it? Being that the caverns are all underground, it was rather disable friendly. Once you get down the initial 70 some steps, the entire walkway which was about 1 ½ miles long was built on flat pavements, so Jake was able to ride in his stroller the whole time. My sister helped carry the stroller while my husband carried Jake down and up the initial steps.

This past weekend the weather was unseasonably warm, we went to Bear Mountain State Park in Bear Mountain, NY. I remember we went there back in 2006, I even wrote about it as one of my first blog entries. So I thought it would be fun to post pictures of Jake during last trip and this trip to the park. Can’t believe how much he has grown, and I clearly have as well.



That is it for now, we do have more trips planned for in May, come back to visit us if you would like to know when and where!

Thursday, April 02, 2009

First update in 2009

I haven’t updated once in the New Year?! My bad. I was very sick for a few months, but no worry, I am much better now.

Jake had a fairly uneventful winter season, no major illness – knock on wood. There was also a lack of outstanding improvement to speak of, another reason for my lack of update. However this week, while still recovering from a cold, Jake showed improvement in his walking. Today he took 64 independent steps without falling, which is his best record yet. I was just thinking about 3 years ago, he couldn’t even stand independently for one second, today he walked 64 steps. This transformation probably takes less than a month for a “typical toddler” who is learning to walk, (it is a rough estimate on my part since I have no personal experience raising a “typical toddler”), and it has taken Jake over three years and countless hours of physical therapy. But as the saying goes, it is better to be late than never. I am more hopeful than ever that Jake will be an independent walker, at least for short distance indoor ambulation.

In March 09, we also had a stair glide installed curtsy of the NY State Medicaid Waiver program. It is a program for disabled children whose families do not qualify for Medicaid. One of the benefits is once a year the program pays for a home modification project if needed. Since we moved into our new house, Jake’s bedroom is on the second floor, we thought it was necessary to install the stair glide for Jake. Here is a picture of Jake thoroughly enjoying his new ride.

The third big update is that … well, remember I wrote in the beginning, I was very sick for a few months, yeah, very sick. Let’s see, the symptoms were extreme nausea, frequent vomiting, fatigue, couldn’t keep any food down, felt horrible all the time, etc. The good news is by month 5; most of the symptoms have significantly reduced. If you still can’t figure out the source of my illness, then there is only one thing left to say, Jake will finally be a big brother this August. I just had the 20 week anatomy ultrasound, and according to the medical professionals, all is well with the baby. Still, I am nervous and I am keeping my fingers crossed that this one will grow up on “auto-pilot”, as how one of my friends who also has a special needs child describes her typical second child.

That is all for now, I hope it doesn’t take me another 4 months to do a second update.