Your prayers are working

It has been a hard time watching how Tommy's health got deteriorated. We miss to see him spinning to get dizzy, then running to the cough before falling on the ground. But he will be soon at home running, making us laugh and making the house messy.

Even although, the last 7 days have been stressful it has made us realized how many people's lives Tommy touches without us knowing it. Tommy is in the prayer list of several churches. Our families, friends, neighbors, coworkers, Tommy's teachers and even strangers care about him and are praying for him.

It is amazing how the hospital staff care about him, he is not one more patient. One nurses stopped me in the hall asking for him. Other nurse who was taking care of him on Saturday night told me people in the floor Tommy was before going to the ICU were asking how he was doing. I went to eat at cafeteria in the hospital on Sunday evening. I was ready to pay my food when someone said: I got her, I will pay for her food. When I look at her, I didn't know her and I asked her: Did I meet you somewhere? She answered: Yes! I admitted you guys to the hospital and she asked: How is TOMMY doing? She remembered his name, it was very impressive to me that I couldn't tell her not to pay for my food. She had good intentions and it would be rude from me not to accept it. I know now, why the hospital is in the top ten best nationwide hospitals in pediatric care, it is because of its staff's passion, dedication and love for what they do, saving lives.

Tommy's condition has improved since Tuesday because of all your prayers and the amazing care he is receiving at the hospital. He is out of the ICU! He was transferred yesterday afternoon to other floor in a regular room. We feel a relief he is not at the ICU anymore. He was more playful and flirting with the nurses yesterday. He was able to breath on his own yesterday; so the doctors lower the oxygen, and then, switching him to the ventilator. But they had to switching back to the oxygen because he couldn't keep up due to the hypotohnia, so it will take longer for him for a full recovery. The doctors have a second plan to help him to clear his lungs up. They will start him in breathing treatment and will give him pressuere in his back, so all the chunck of moucus on the bottoms of his lungs can be cleared off. He is tired because he couldn't sleep very well last night. He has been smiling, happy, playfull and more comfortable than before. He has drunk more fluids and I will try to feed him with solid food later. He will be realized from the hospital as soon as he regularly drinks and eats and is completely out of the oxygen.

Your prayers and good thoughts for him are helping him, please keep praying for his health.

I will write about RSV, so any person who read my blog can be aware of RSV. Specailly, parents who have a child with Trisomy 21. Unfortunatly, RSV affects our kids in a more severe way than to typical children.

Prayers for my little fighter

The last few days have been very hard for our family because everything turned upside down when Tommy was transferred to the ICU at the local Children's Hospital. Everything started with a cold. He was congested on Monday. Then, he had a fever on Tuesday. Later, he had a few more fevers on Wednesday and finally, a health break down on Thursday afternoon. He began to have shorting breath even when we were using the nebulizer and the fevers didn't go away even we gave him fever relief medication. I called to the pediatrician exchange number and the nurse began to be concerned. So she decided we should do the nebulizer again. We did it and she called back in 15 minutes, but Tommy's short breathing didn't improve much, so she said:

"He is in a red zone,

you have to take him to the hospital now.

If you notice his lips turn blue and

his breathing get worse

stop the car and call 911."

After her words, I remained calm because it was the best I could do. So I got ready and took Tommy to the car around 7:00 p.m., but his breathing wasn't looking right and his lips where turning purple on the car, so I called 911. The paramedic from the fire-station got before the ambulance, so he checked him and it wasn't that bad. But when the ambulance came, the paramedics set him the ambulance and checked his oxygen levels and they began to be concerned. So they decided to take him to the nearest hospital that it is just 5 minutes from my house instead going to the bigger hospital that it is about 20 to 25 minutes where the hospital staff was already waiting for us.

Once he was in the hospital, the pediatrician asked for blood work and x-ray, it was positive for respiratory syncytial virus (RSV). So they made the decision to transfer him to a bigger hospital, which is one of the top ten best nationwide hospitals in pediatric care. He was transfered by helicopter, even his condition wasn't so serious at that time.

Tommy's condition is stable, but he has to fight the virus by himself. He had to be sedated due to his constantly fights against the nurses and trying to take the mask out of his face. He needs the mask because he is not breathing on his own. Being sedating has helping him to rest and may be to begin the healing process. There are good signs that may be the beginning of his recovery:

• RSV leads to other serious lung infections, such as: pneumonia, but he doesn't have it. He is still at a high risk to get it, but the doctors gave him the treatment as a precaution. He also has the vaccine against the pneumonia.
• He hasn't had a fever in the last 24 hours.
• His oxygen level went down from 60% to 45% and then to 35% tonight.
• His breathing rate is stabilizing because before it was all over the place due to the agitation.
• His chest doesn't sound so congested as it was.

Tommy is going trough a lot right now, but he is a fighter and he is strong as I am. This is one more battle he will win. Thanks to our families, friends and the hospital staff for all their support.

He may not be a millionaire, but he has a fortune in love. So there are a lot of people praying for him. Right now, the best we can do for him is to pray. If you are Catholic and know the rosary, please pray the rosary for him. I do believe in the power of prayers!

This photo was taken Friday night.

A day before he was transferred to the ICU.

Matching by shape

Shapes recognition and matching will foster a young child's mind to further develop in language, cognitive, social and fine motor skills. It is believed that shapes recognition and matching "play an important role in math performance" (Mazzocco et. al, 2006 pg. 89). Matching is an important skill for young children to develop because it is an essential pre-reading skill.

My son began to match simple jumbo peg puzzles at an appropriate age and matching has become one of his best skills. Our DT brought the Voila Shapes & Shadows Wooden Recognition and Matching Game at the beginning of September. I liked this board game so much that I immediately hunt for this toy.


I like this toy because it has 20 sets of wooden shape and shadow boards to recognize various shapes and match them with the corresponding outlines. Young kids will develop shape recognition while they strengthen their visual memory and fine motor.

Tommy got engage with this game since the beginning I think it is because of the 3D shapes. We currently use two shapes at a time. We will eventually increase more and more shapes and shadow boards until he can match all the 20 shapes and shadow boards. Tommy puts the shapes aligned with the shadow board sometimes. Other times, he puts the shapes upside down on the right shadow boards or he puts the shapes on the side of the right shadow boards, so we accept it as correct because it is expect at his age.

Enjoy the video of Tommy matching by shape.

Tommy associates the rectangle and square shapes with the iPhone.
At the end of the video, he pretends he talks on the square iPhone
and he handed it to me to talk to daddy on the square iPhone
before matching.

My Perfect Child (Part 2)

A while ago, something estrange happened after I wrote about My perfect child back in August. Tommy and I were by our-self because daddy had to work that weekend. and I didn't want to cook, so I went to our local Dali market to buy sandwiches. When I am getting into the Dali market, I saw two ladies standing close to the entrance and one of the ladies looked straight at Tommy and her faces lighted up as soon as she saw him. I got skeptical because you never know who is surrounding your kids. I Kept walking and smiled back to the ladies. The one lady came to me a she said: He is so beautiful, he is just PERFECT! and she said to Tommy: You are so BEAUTIFUL. Tommy smiled with the biggest and perfect smile to her. I just said: Thank you and kept walking.

Months later, Tommy and I went to Toy R Us to buy a gift for our little neighbor. Tommy and I were browsing. Suddenly, I saw a lady who was looking at Tommy and she asked me: How old is he? and I said: He is two years old. She said: That is the age where they are all over the place and she look at him and said: He is PERFECT! After this, I talked to the lady for a little while.

These two ladies just reaffirmed what I has always known since I was expecting Tommy. They made me realized people will come into our lives who will accept Tommy for who he is and I should be open to them. Then, they will enjoy so much, as I do, watching my son becoming a child, loving his spontaneous silliness to make us laugh, admiring him for every milestone he accomplishes at an appropriate age, celebrating his triumph over a challange because many things are not for granted for him and contemplating the master piece he is himself because he is a PERFECT child!

Boomb! Vacabulary Explossion

Since Tommy was a baby I tried to get services for Speech therapy. I knew other infants with the same diagnosis than my son were receiving Speech Therapy. I requested Speech therapy through the Early Intervention Program (EIP), but it was denied because Tommy's Pragmatics skills, according to a private paid evaluation, were in the 9-12 month level and Gesture skills were emerging at the 9-12 month level when he was 8 month. When Tommy was 13 month, we did other private paid evaluation because I observed lack of expressive communication, even although he was saying "mama", "dada" and "hi"; He was also signing "more" and all done". But he wasn't combining gesture with pointing! The evaluation showed Tommy's receptive language was in the average range, but his expressive communication was delay. Currently, the gap between our son's expressive and receptive language communication is huge.

Tommy has received Speech therapies from the EIP and private paid therapists. All his therapists agree Tommy has good receptive language comprehension. Since he said his first word "Hi" beside mama and dada at his 13 months, his expressive language communication has slowly progressed. But I am conscious that he is being raised in a bilingual environment, which is making it harder for him. But my husband and I decided to take advantage of mother nature because babies have a natural faculty to understand any language until they are about 6 months old, after this, the brain shots it down. But if the baby keep listening more than one language, the comprehension for these languages naturally keep progressing.

Since Tommy began to independently walk five moths ago, we has noticed his expressive communication began to progress a little faster. Last week, Tommy added 6 new words to the list, those are: purple, red, kick, walk, world and guapo (handsome). His Speech Therapist thinks Tommy is holding the word he knows off for her. I agree because it is the same pattern we have observed in his gross motor skills.

• Tommy has a vocabulary of 70 words, but he constantly hear 38 words. The words are there it is just matter of time when he decides to constantly use them.
• Tommy says 9 expression, but he constantly use 8.
• Tommy says 11 sounds (animals/vehicles) and he constantly use all of them.
• Tommy has combined two-words, but it has been inconsistent.
  

Tommy's expressive communication skills
keep progressing which is the most
important for us.

Our Ace card under sleeve

The Proprioceptive System has an important role in getting the limbs working properly. I have seen the tendency to put more attention to the Proprioceptive System if the child has sensory issues. According to the book 'Raising a sensory smart child' by Lindsey Biel and Nancy Peske The best way to get stronger the joints is with heavy work activities because they provide joint compression and traction.

Even though we are doing several activities and using different toys to strength Tommy' s upper body, our ace under sleeve is the 'Wheelbarrow Walking.' This a complete exercise that requires the use of the all areas of the upper body (hands, arms, shoulder and torso). The Wheelbarrow Walking is an exercise that involves the Proprioceptive System, which is part of the vestibular system and its main function is to send special receptors in muscles and joints that travel quickly from the cerebellum to enhance tone and joint stability.

Beside the Wheelbarrow Walking, we try to create an environment where Tommy can lift some weight during structure or free play.

• During Bath time, Tommy fills and lifts his watering can by Little Tike. He lifts about 2 lbs. every evening. He loves to play with his watering can without knowing he is doing therapy.
• During play time, Tommy throws his 2 lbs. weighted balls. He doesn't like it so much because the balls don't get so far. So we do it just a few times just to provide some joint compression and traction.

We have seems enormous improvement on Tommy's fine motors skills since we started the "Wheelbarrow Walking" as our Occupational Therapist recommended last year. Tommy has always been fine motor driven, but it has been easier for him to meet developmental fine motor milestones, as soon as he got his upper body stronger because he has developed a better body stability by doing Wheelbarrow Walking. Tommy's cord needs to get stronger, but it is strong enough to do some pre-school activities, such as: cutting with help and putting stickers all by himself on his sticker album. The best of all, this type of exercise doesn't require too much time or effort.

Transition from the Early Intervention to the Special Education

Picture of Tommy that will be in the

cover of his file at the school District office

I was very nervous by just thinking my son won't receive more therapies at home. I was worried about me not being prepare for all the transition meetings because I didn't attend to workshops about IEPs, which are offer for free in our State, but I didn't have the time. I have searched online information related to IEPs and I think I have a good overview how to go through this new step in my son's life. So far, the transition has been smoothly and relax.

The Special Education Process:

1. Child Find:

We were referred for the Early Intervention (EI) program to the School District. So the school district new about our son and we didn't have to contact them to request services. Back in september, our last 6 months review meeting with EI program and the transition meeting to the School District was scheduled at the same time. Most of my son's therapists, our service coordinator and a school district representative got together at my house with my husband and I. Having both meetings together allowed to the School District Representative knew a little bit how Tommy is and how his therapists have been working with him. I presented Tommy's developmental summery to our service coordinator and the school district representative. This summery is divided in 6 developmental areas as follow:

• Cognitive & Playing Skills (Personal Curiosity and Autonomy, Solving problems, Sensory development, Memory and Pre-academic skills, Creativity, Interacting with toys and List of toys)
• Communication kills
• Fine Motor Skills
• Gross Motor Skills
• Self-care Skills
• Social Skills

The summery has all milestones and abilities Tommy has accomplished in certain period of time, as well as, progress notes, activities to strength and improve his weakness and concern notes. It takes me a while to prepare Tommy's developmental summery, but I enjoy it because it makes me realize how much he is doing and find the areas he is struggling.

2. Request for Initial Evaluation:

The school representative contacted us back in December to schedule an appointment to go through all the data and create an assessment plan for Tommy that will help to establish the eligibility of services. The meetings was on January 6th at 8:00 am. The school representative, the school principal, a speech therapist, a special education teacher, my husband and I were present at the meeting. We didn't invite our therapists or service coordinator because we thought it wasn't necessary. The meeting took about an hour or so and we discussed the specific areas of Vision, Hearing, Health, Motor (Fine and gross motor), Sensory, Speech/language, Cognitive, Adaptive, Social/emotional/behavioral and Pre-academics. The Pre-academic area wasn't take as part of the assessment plan because my son is not at the school yet, but a note was written in the assessment plan that he doesn't have problems learning pre-academic skills so far and he is learning the numbers. At the end of the meeting, we all agreed Tommy will be evaluated in three areas:

• Motor (Fine and Gross motor)
• Speech/language
• Cognitive

3. Evaluation:

Tommy's first evaluation will be in the area of motor (PT and OT). It has been scheduled for the end January and we have to schedule the other two evaluations.

The next steps to develop my son's first IEP are:

4. Eligibility Determination

5. Eligible

6. IEP Meeting Scheduled

7. IEP Meeting

There is a possibility my son won't qualify for some services through the School District. If this would be the case, we could get those services through our Regional Center. Our service coordinator already enrolled us at the Regional Center and we will get call from them closer to Tommy's birthday. I am glad we are already enrolled because the enrollment process at the Regional Center is taking about a year.

Wish us good luck!