Merry Merry Christmas to all!

Make a Smilebox scrapbook

What??? Autistic???

What??? Autistic??? I hope not! That was my first reaction when my husband told me that Gerald's speech therapist mentioned that he might have autism. I hope they did just come up something like that word because he is not formally talking yet. He had gone through a lot this year, and he is not out of it yet (MRSA need to deal with). Gerald Jay has this weird thing that he always do like staring up on the selling or moving his pupil towards the corner of his eyes, and his therapist thought that he might have the signs of autism. I can see that he has another appointment to look forward too grrrr. My husband has been troubled by that thought since he came back home from Gerald's therapy session today. So, I searched some information about autism online. I found some websites  that are very informative and read the sign and symptoms of early autism  just to comfort him.


Possible Indicators of Autism Spectrum Disorders ( About.com: Autism)

• Does not babble, point, or make meaningful gestures by 1 year of age  ( GJ does meaningful gestures all the time)
• Does not speak one word by 16 months ( he had a higher social skill by six months)
  
• Does not combine two words by 2 years ( he doesn't do this often I agree but he copy what ever we say to him.)
  
• Does not respond to name ( This is my biggest concern because he does not respond when you call his name. Although, he knows that we are calling him ;( )
  
• Loses language or social skills ( he lose some language skills due to his heart surgery last Feb., but he has the best social skills [ at least that is what we saw from him])
  
• Poor eye contact ( he can stare at you actually)
• Doesn't seem to know how to play with toys ( He knows how to play toys and even figure out what to do with it or how it works)
  
• Excessively lines up toys or other objects ( he does line toys up like a train.  That is also the reason why I bought him the train and train tracks)
  
• Is attached to one particular toy or object ( No, he his not focusing on one particular toy, but he have favorites one. I think all kids do.)
  
• Doesn't smile ( He score higher point on this. As you can see his pictures)
  
• At times seems to be hearing impaired ( he can hear me when I yell )

I also look at the sign and symptoms of  Asperger Syndrome , and seems he only have couple signs that almost match. I
I don't think that he is autistic though, but whatever they recommend to get this issue strait  I will do it. It's just frustrating and sad.

Please give me your opinion or if you have a knowledge about autism. I will appreciate it! Thanks

Winter Party

Every year the Atherton's Family hosting a winter party. This is our second time to attend in this party, and I am telling that my little heart boy had a blast.

At first, I thought he was gonna go to play the snow and join the other kids enjoying playing snow balls, but I was wrong. He normally observe first and then if he thinks that he can do it, he will join them.

He would rather be by himself playing who knows what. First time for months that he refused to his picture taken, but today he had fun and pictures is great souvenir :-bd

Another good pose that shows " attention" kind of pose.

* You look great sweetie ~ Mom*

He even played the ball...

 

...checking out the Christmas balloon...

and sitting on the grass ... he must have been tired:).

I like to see him happy playing with other heart kids too, but he is used to play by himself when on other kids want to play with him. Before he had the Ng-tube that was taped on his face. But now he got his g-tube...he looks a whole better and normal. I hope he will gain more friends as he grow up.

Anyway, while brother was busy and entertaining himself my little princess was busy too...

she was eating pizza crust! It was good food!

also eating her shoe :)... or whatever she can put in her mouth.

Anyway, I would like to thank the Atherton's Family for giving us a nice place for our kids to play and for providing delicious foods. I also glad to see some of the heart moms from our group , and I am glad to met the heart moms that I follow blogs (owen's mom and grace's mom) with.

HAPPY CHRISTMAS TO ALL!

Cardiology Visit

Gerald had his follow up check-up with cardiologist this morning at the CRS clinic. It was a calm visit because Gerald cooperate with the medical assistant to take his vital signs ( he normal screams during vital signs and at the end we never get a chance to check his blood pressure on four limbs).

He lose weight since they put him on diet couple months ago. Anyway, there is a little change in his medications. The blood thinner which is the aspirin was reduce to half tablet a day. We noticed that he bruised easily, and I hope by reducing the blood thinner intake will solve the problem.

Gerald still on the two month window (cardio visit), and he will have his first heart cath after a year of fontan procedure in summer. Heart wise he looks wonderful, and everyday he is getting back to his normal activity.

Another, we have a little concern about the MRSA site though. The wound site kept protruding and the redness around the wound is getting bigger. They heart surgeon recommended to see a plastic surgeon. I don't have a date for that yet, but I already turned in the progress note to the PCP this morning. I hope the referral to the plastic surgeon will be out soon.

Rehearsal for his presentation

Presentation will be tomorrow. He rehears and rehears, and rehears, and rehears, but it was not prefect yet. Tonight when come back from work at 11:30PM I will make him rehears again.
Well, I hope that he will not forget everything that we rehearsed last week.

Anyway, I wish my hubby good luck!


******************* UPDATE ************************
He did well on his presentation. He also find out that his instructor have a heart defect too.

Hubby's Poster for his Presentation

               Ralph is taking COM 100 and PHY111 this semester. Towards the finals they have to make a presentation of what they passionate about. My husband been very stressful about this coming presentation, because he hated the class and he took English class some 30years ago. He was just not interested of standing in front of the class with bunch of 20 years old students. Anyway, he needed this class to graduate. Therefore, he worked hard to finished his presentation paper, and actually he did pretty good. Now here comes that part that he needed help , making the poster. Well, no worries because Nelda is here to the rescue . He asked me yesterday to buy a foam board, and he painted it with blue. After it was dry, I took over. I printed some picture off the internet ( all pictures were cited) and put taped on the back. I let Ralphy put on the board, it was in fact his project and here it is...

He chose this title and Gerald heart defect is his topic the Hypoplastic Left Heart Syndrome.
What do you guys think? I coaches him of where to taped each of those pictures.
He did pretty good isn't it? or We did pretty good . 

Happy Thanksgiving to all!

Just a quick note to all my family, friends, and visitors. Happy thanksgiving and hope you guys have a wonderful family get together!

God Bless You All!

A long update!

My husband and I been very busy with our school projects lately, and I been neglecting my blog for quite sometimes. I apologize!

Anyway, aside from being busy with our school projects, my children were busy with their own stuff too. Kathlyn just turned seven months and she is quite a handful now. She was with her dad sitting on the dining table and kept her father entertained while dad was doing his homework.

... during our dinner kathlyn has been the center of our attention. She's been putting every single toy that she can get her hands on in her mouth. She also eating more of the baby food.

Normally KC is breast fed, I didn't even noticed that she can hold a feeding bottle until one day, I gave her the small feeding bottle. Just for the fun of it to see if she will take it... and she did.

Gereld Jay has been very good and healthy. The dietitian form the hospital put him on a diet, because they said he is over weight. He lose almost three pounds in a month and that makes me concerned a lot. I am tempted to feed him so more of the pediasure. The G-tube has been working well, and I really loved it. However, GJ always unhappy just to attach the tubing to the g-tube. He also had tons of doctor visit (peds, cardiologist and GI doc) last month and so as this month. Cardiac wise, he is really good and I couldn't ask for more.

He still going to school by bus and every day he is excited to wait for the bus to come and pick him up.

Also this month Kathlyn has been initiating  to crawl. This was her first time on all fours.

Just in case you are wondering of what I was doing? I was reading my homework to my kids. I was so burned out with my studies and it was very stressful too.

Gerald was tasting some solid food too. That day he didn't asked for that chocolate. I was eating it when he just suddenly took it away from my hand and started leaking it. It was very funny watching him. Whatever works for him just to get him to eat. Go forth son!

 

Another wonderful things that happened with KC is that she is teething :)

She was pretty scary , because she bit me... lol! She was salivating and everything goes in her mouth.

Branden has been  Gerald's primary baby sitter for quite sometimes, since Branden still unemployed he offered (not really :) ) his help so that I can get time to study. Him and Gerald are close so it was all good!

Kathlyn and Gerald Jay

She is now standing while holding on the rail of the play pen.

A recap of Kathlyn : 3 days before she turned 7 months old , she was holding her feeding bottle at 7 months old, she's teething, on her 4's  and standing while holding the rail of the playpen and initiating to crawl. She accomplished a lot this month. Good Job baby K.

Last but not the least, MRSA update.

This is GJ's chest where the MRSA site was. His been battling with MRSA since Feb. 09 and it keep coming back. This time it wasn't a big deal but his cardiologist was concerned that if it MRSA agin we have to dealt with it as soon as we can.

GJ is looking great no fever or any signs of infection though. I called most of his doctors that are involved of his MRSA treatment and they were all okay with that.

So far we are just waiting for that little swelling to burst. I kept it covered!!! So, no worries. GJ is not contagious.

Just a quick update

I feel that I neglected my blog for quite some times due to my daily chores and considered hectic each day that pass by. Anyway, Gerald is doing well and Kathlyn is trying to crawl, not crawling yet. She finally rolled over yesterday. Gerald still loves going to school :). Myself is still busy doing homework as well as my husband. Everything is doing great over here. Thanks and you guys have a wonderful time vising my blog. Take care!

GJ is BACK HOME

Gerald Jay is now back home! He was so excited to be home again. At home no limits, no limited area, toys, and etc. BUT he cannot watch the TV more than two hours, that is the down side of being home. Well, I guess he doesn't care at all wither have TV or not, all he cares is about being home. As I understand the doctors and nurses were not sure wither GJ have influenza or not. Because he just had the flumist last week, and the nurse put it in his nose which probably makes it an active  click here for flumist info , so when they tested the specimen from his nose came back positive of influenza A. Although he doesn't shows any signs of flu. Anyway he is all good and thanks to all who keep following us and praying for us.
Thank GOD he doesn't have a flu!
Have a wonderful day to all!

Day2: Hospital Stay Influenza A

Gerald looks better today. He slept well last night without grunting. He only cried when the nurse came in to check his vital signs. I stayed with him since 1:00am, and today he will be alone in this room ( It make my heart break just to think about leaving him by himself in this room) but Kathlyn and I will be at the waiting room for the rest of the day. It doesn't make any sense to me that I cannot take KathLyn in his room, but we can stay in the waiting room:(. Ralph is going to school until 11am today and he is going to work at 2:30 pm. Gerald's big brother have school too, so GJ will be alone here for quite sometimes.
As I was talking to the nurse last night I got an impression that if you have the influenza A (FLu) you are most likely to have the swine flu ( I hope not!). Gerald has not have the swine flu mist yet only the flu mist. I am really concerned about that swine flu thing, because he already have the history of having pneumonia  in his past surgeries. Pneumonia is one of the side effect of the H1N1.

Gerald in the crib and mom ordering breakfast:)

Back in the Hospital

Gerald had a rough night again. At 3am he I cannot comfort him at all and his temperature went up to 101.7 degrees, and also his stomach was distended dramatically since yesterday morning. He was hot  and when I touched his stomach it was hotter than the upper part of his body , so I took the temperature of his stomach and it was 103.4 degrees F. It scared me so much. Luckily his dad woke up and took him to ER around 3:45am. He is now admitted at St Joe's hospital. They cultured a specimen from his nose and they said he have a flu.

GJ is not feeling well today

 The toughest part being a mother is to see my kids getting sick, in pain, and etc. 
My boy is not felling well today. He did not sleep well last night and he was grunting as if he was in pain. He was running a temperature of 100 degrees F. I checked his g-tube site to see if that infected, it wasn't. Also, when he got up he went directly to the front door and he literally insisted to get in the car. I was telling Ralph that he is not felling well, and he wants us to take him somewhere (he might thinking the ER). Anyway, he stayed mostly in bed the whole day. I gave him some Tylenol and mylicon , it seems that his stomach is a little bit distended too, and I think these meds helps him a lot.

Feeding Pump: It works

We tried the Kangaroo Joey enteral Feeding pump yesterday and it works. Not only that it was very easy for Gerald to carry. Although  he doesn't want to carry the back pack, I still made him carry it so he'll get use to it. I am glad that we got that back pack, it so much easier now to go places and not worrying how to feed him if we don't have the pump. We have total of four feeding pumps in the house now. One was rental though, I already called the company that I want to return it at the end of this month :).

Here he was carrying his back pack and then later he was taking it off

now he's crying... I explained to him that if he won't want carry this back pack, he can push the pole whenever he want go. I think he understand the pole is a lot harder to get around the house:)

the rented one...

GJ owned this too. I got this from ebay last June 09

This is not portable that battery pack is attached to the feeding pump, so we never take this anywhere ;(

Gj owned these too. they are both portable...the gray one died on us last June (I got it from ebay too) and he used it for couple year.

The blue pump is newer pump but I got it used and it works! :)I love it because it is very small and light wt. easy for GJ to carry.

New Gadget of my little man : kangaroo Joey Feeding Pump

 The smallest and portable feeding pump ever!

Got this used feeding pump through ebay link last night. I started bidding on it three days ago and the bidding was ended last night. When Gerald got of the hospital five days ago (g-tube placement), the Option 1 link medical supply delivered Gerald's g-tube supplies including the kangaroo Enteral feeding pump link. Now, we have our own Kangaroo control feeding pump but it's not a portable one. I bought through ebay three months ago since his first kangaroo pet feeding pump (I bought it used too on ebay couple years ago) died on us in June 2009. The supplier called and asked me if I need a pump. I told them yes since I lose the portable pump that I was bidding on ebay that day. Therefore, they sent us this feeding pump called Joey pump. It was a smallest pump that I ever seen. I loved it. Just like love at first sight with that pump =)). But I was afraid that the insurance company will not pay for it later, so I went online again on ebay to be exact and started bidding again of the same kind of pump. I was hoping to find a cheaper portable feeding pump with feeding bags, but this was the cheapest that I can find. For $300 worth I think this was a good deal since the brand new of this kind of pump is worth more than $1000. Plus it includes the back pack which costs a lot too if you buy it separately. Anyway, I am going to test it tonight and see if really works. The lady that sold me this said that she only used it for couple years.

I hope this one works. I just don't want to be in the position again that the insurance will not pay for the pump and we ended up paying for the rent for $ 170 per month. I can't afford it. Not to mention the cost of the feeding bag itself. Actually, what I am really after for is the feeding bags. It seems I have no luck with good feeding bags, it keeps failing on us most especially during the night when we are half asleep and trying to get it to work.

Anyway, we picked up this pump tonight, since it was sold locally :) free shipping (of $26.00) only the cost of gas worth $ 4.80 round trip. The only thing that I noticed is that wet spot in the middle of the screen, but its okay I'll just dry it under the sun ;). I am just happy to get a pump for GJ. We can now go places without worrying how to feed Gerald and not rushing home or delaying his feds for few hours. Since this pump is so compact I can even put it in my purse when I'm in a hurry..lol.

The rented one, I already called the supplier that I am going to send it back and I just need feeding bags. It save GJ's  insurance (I hope)company every month.

Conference with GJ's Teacher

"The most active, social, helpful,friendly, and playful amongst his classmates" this was the first sentence that his teacher told us. Gerald's teacher was really happy about Gerald's improvement and him very social at school. He is very cautious when he approach or even playthings at school or even at home. He is not a type of kid that once  he sees a toy he will just crab it and play with it. Gerald is totally a whole different attitude. He will not touch it right the first time, he observed first for more than probably five times before he attempt to pick up or put away a toy . The teacher have the same thing to say, and she agreed with us the Gerald's tends to observe first, and he doesn't wanna be told what to do (I guess its typical for boys). She also said that Gerald is the one who makes friend with everyone in his class. He helps other classmates to put away chairs and toys. To tell you the truth, I just finally realized that he was doing it at home with a little cues but he will do it, and I was not giving him credits. I was ashamed to myself. I should do better. But I am very proud of him that he is such a good boy. He know that mommy love him so much. Thank to Mrs. Redfern (GJ's teacher) for taking care and teaching my son the knowledge and for acknowledging his great effort at school.

Gerald Jay was having a good time playing while mom and dad was having a meeting with the teacher.

another view of him playing by himself

he was serious

a pose with mom

pushing his little sister stroller... go go go! :)

still pushing the stroller.