Wednesday, November 29, 2006

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.... :-)

Wednesday, November 22, 2006

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!"


Tuesday, November 14, 2006

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.

Sunday, November 12, 2006

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.

Tuesday, November 07, 2006

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. :-)

Friday, November 03, 2006

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.