Thursday, July 16, 2009

Appointments,labs,therapy, doctors...UGHHH!

The last two weeks had been crazy with so many doctors appointments. If somebody told me that Tarek will have in the future 10 different doctors maybe I wouldn't believed it. In these two weeks we have seen:
1.-the new pediatrician in the HOME program (University of Utah)
2.- a pediatric psychiatrist for a behavior evaluation (home program)
3.-The Sleep Doctor to check is sleep apnea.
4.-A Developmental pediatrician ,Dr Carbone (home program)

A lot of new information in this 2 weeks, tarek started today levothyroxine 12.5 Mcg to regulate his under active thyroid. Hypothyroidism will explain all his symptoms :
*lethargy and decreased energy
*Cold and HOT intolerance
*muscle pain and stiffness
*constipation
*weight gain
*dry skin
*mental slowing
*depression

Of course I'm very upset with his old pediatrician and the old developmental pediatrician that didn't check well his T4 levels that had been low for 2 years in a row and the years before they just check TSH that were ok but they forgot the T4 free test UGHH! But thanks to Dr Humphery's and the Doctors in the HOME program maybe we can get to raise his Thyroids levels and he will feel better soon.

We still need to go to the Dentist (Aaron Christensen), Do his Hearing and Visual evaluation in the Primary Children hospital, and do some Blood work .

And TAREK DID GREAT!

Recommendation for all Moms, always ask for a copy of every test, because you can get always a second opinion from a different doctor and you don't need to repeat the test.

Saturday, July 11, 2009

Gluten and casein Free diet FAVORITES!


Tarek love's bacon. Oscar Mayer fully cooked bacon is our first choice.

Oscar mayer Beef franks! YUM

Ancient harvest QUINOA linguini the best pasta for your best spagueti recipe.










IF your kid or you love pancake THIS IS IT Pamela's baking and pancake mix is so tasty!



Who doesn't love chocolate cookies. Betty Crocker just put in the market a gluten free line and his delicious! I found mine in the Smith's market that have a helth line (12 th street ogden).










This Ice cream AMAZING. is made from coconut milk and chocolate. Supose to be just for tarek because it is expensive but I have to hold my self to don't eat the all ice cream.




I just made the brownie mix 2 days ago. You coudn't taste the diference between gluten or not. My sister vivi said" these are even better, more softly and a lot of chocolate" YUM

Sunday, July 5, 2009

EVERYBODY CAN MAKE A CHANGE!


A year ago searching in the net I came across with some pictures of chilean children with Ds and I was able to see my tarek in every children smiles, this is another Extra gift that God gave us to moms with special children!. Well I got the idea to send to Chile a little box with activities,books and other items related to Down syndrome. I contact Suzie smith (President of UDSF) to ask for help and a few months after we got together a little box to send back home. When you have the great opportunity to live in other countries you learn how to appreciate the great resources that USA give to our kids everyday,but more important you learn how to "give back" to the one's that are not so lucky like you specially my people from Chile. I just want to say thank you Suzie and Lily for help me to put this box together, I hope you enjoy seeing the smile of the children holding the bears and other items, Thanks you SISTER Pili, to help me to deliver the box and be so nice with the families in UNPADE,thanks Unpade for the great support that you give to the families and specially Thank you Tarek to teach me everyday how to be a better person.I hope next year more people get together and we can send a bigger box to Chile and help so many children that need better resources to have a better life.
Cecy...the happy mom.
Un anio atras mirando el internet me cruze con fotitos de ninos con sindrome de down en Chile. No pude evitar ver a mi hijo en cada sonrisa de uno de ellos y me propuse enviar una pequena cajita a chile con actividades y cosas pertinentes al sindrome de down. Pues me comunique con Suzie Smith la presidenta de la organizacion aqui en Utah y juntas recolectamos algunas cositas que enviamos con mucho carino. La verdad es que cuando uno vive en otros paises tiene la oportunidad de aprender a apreciar la enormes oportunidades que tienen nuestros ninos al vivir aqui en USA y uno aprende a agredecer y a devolver a quienes no tienen la misma suerte. Gracias especialmente a Suzie y a su hija Lily por ayudarme a juntar algunas cositas, a mi hermanita Pili que tiene un corazon de ORO y fue la conexion perfecta para poder entregar la cajita a manos de UNPADE , a UNPADE a Adelmo y a sus carinosos padres y ninos por hacer una labor maravillosa con muy pocos recursos pero como una sonrisa permanente y por supuesto..... a mi hijo Tarek que dia a dia me ensena a ser una mejor Mujer.
Cecy...la mama feliz.









































































































































































































































































































Saturday, July 4, 2009

GOING GLUTEN FREE!


Today is tarek first day with the Gluten Free diet. Knowing how important for tarek is bread and cookies I went and bought a bread maker in ksl.com for $20 and prepare my own Gluten Free flour mix. I got the recipe from Jules Shepard in http://www.youtube.com/watch?v=DYjBwI20FVY. My first Almost bread was awful LOL! I burned the bread. So I tried again and I used jules shepard recipe http://www.youtube.com/watch?v=VHkP6Zxwiqk&feature=channel. The bread turn eatable and by my surprise very good. We tried like 4 diferent gluten free breads brands ,very expensive and horribles :( so I was very happy with the outcome of my bread. But I will continue trying new recipes until we get an Amazing one!
But I made the most amazing chocolate peanut butter gluten free cookies ever, that I will love to share the recipe for other kidos like mine. I got it from jules shepard website and I add the gluten free chocolate chip and crystal sugar. I'm so surprise how delicious ,soft and Yumy they turn and tarek already eat like 10, so maybe this Gluten Free diet is not so bad after all if you have sweet and delicious cookies and the help of great chef like Jules shepard that create this wonderful recipes. next week I will be ordering her Flour and her book, check her website http://www.nearlynormalcooking.com/httpdocs/index.htm for great Ideas.

CHeck her great recipes: http://www.julesglutenfree.com/articles.asp?id=137

Friday, June 26, 2009

Tarek and his school: Heritage elementery.



Tarek had been thinking and talking about his school lately. He told me yesterday: "School...+Bus....+ Haylee (with a Huge smile we think he like her lol).....tony.....+ Mrs mason....itny(for whitney).....Ion (mrs Djoun)....Olala(paola), Andressssss.... Julia....GO !
Thanks Ms Whitney for the pictures are so cute :) Picture 1: tarek having fun in the computer, Picture 2: It's T-ball time(mom bought one of those for my birthday,but she is hiding it until next month), picture 3:Well the picture say it all Lol! he is very flexible! Picture 4:tarek catch a fish in the farm look his expression, Picture 5: I'm tired,playing flag tag, picture 6: playing with OT Therapist.





















Sunday, June 21, 2009

Do you think Dinosaur park is Sensory friendly? mmmmmmm

Like Britney spears will say "Ooops I did it again" I completely forgot about tarek sensory issues and our visit to dinosaur park for fathers day was a disaster. tantrums after tantrums, cry after cry, 10 step forward and 20 running to the exit door lol! I'm not sure if tarek was feeling like this because of the new medicine (fluconazole) or is just not sensory friendly the park. Here some pictures of our visit :)


First Try...First tantrum/ Primer intento...primera pataleta










Second Try...Running away of the park/Segundo intento...Me arranque del parque









Mom I do not like this trip! /Mami no me gusta este parque.








I think Dinosaur talk to loud!/Pienso que los dinosaurios hablaban muy fuerte








Well I'm feeling a little bit better./Ok me siento un poquitito mejor









I can even throw some stuff to the river/Puedo hasta tirar palitos al rio.







I'm calm and thinking in a way to revenge my mom for this silly trip/Estoy mas calmado, pero estoy pensando como vengarme de mi mami por traerme a este paseo que no me gusto.






/Tomando juguito

Drinking my juice









I can see the water from here ..I run faster then Mom LOL! catch me if you can./Puedo ver el estro desde aqui...y corro mas rapido que tu mami...Agarre si puedes.















Mom is this a horse?/mami este es un caballo?












this is another horse!/este es otro caballo














Kisses Mom..I love you, sorry about the tantrums/besos para ti mamita y perdon por las pataletas










What a cool trip!/pucha que lo pasamos bien


















Look my mom My hands!/mira mis manitos.


video


video

video

Saturday, June 20, 2009

The day that I stop breathing for 15 minutes!


Was 6:20 when my life whent black. Tarek had been asking for ice cream and I told him to wait to go to supermarket to buy some. I asked me for bread and juice and Shrek3, happy that I had a few minutes to check my email and talk to my sister in Msn I when to my room for a few minutes, of course I left the door open like this I was able to check on him. A few minutes later I coudn't here tarek and for my surprise the front door was open. Instead to run outside I checked every single room hopefully will find him inside I thought! But tarek wasn't in the house, I grabbed my cellphone to call the police and I run to the swimming pool because I know I much He like it. But he wasn't there, at that time I was screaming,panicking and yelling his name. I called my sister thinking that my brother in law that is a detective will help me but she didn't answer my 2 calls. I run to the playgrounds we have 2 in the apartments but he wasn't there , I called my ex husband he was in his way, I run to the voleyball court screaming his name and the Fear of lost him and horrible feelings block my head, I coudn't stop thinking in ADJI Desir the special need boy that got lost in january of this year and they never found him. I can express the fear,the guilt,the pain in my heart, I was runnig toward washington blvd and I just remember that we had been walking to walmart and Lowes in the past afternoons and teaching tarek about the traffic light and I coudn't even breath just imagining tarek crossing washington blvd, I started dialing 911 when a police officer found me and told me that they found a little boy in washington Blvd and 400 North, I run as fast I could and saw my tarek sitting with the police ,happy like always, I can tell you what I feel when he hug me, he just say ice cream , I'm sure he was going to walmart to get one :( ,the police started asking me 100 questions that some I coudn't even answer, good that tarek dad arrived and answer some (like my birthday or my address),they told me that DCFS was in their way here and I felt even worse, for sure they will think what kind of mom I'm that lost his only kid, more of the same questions where add when the social worker came, they decided check my house which she did, I coudn't believed that tarek was able to open the 3 locks that I have in the doorhe never did before this new treatment, his progress in manny areas are a lot that now he is able to open the door and go to Mc donald to buy an ice cream. They suggest a Medical Id bracelet, because they were asking his name and he said it but his name is not COMMON and they didn't get it, also have an alarm on the door and move to a highest place the lock wich I did.
I was crying for so many hours, I'm so lucky that he has so many gardian angels that protect him, and there is a happy ending in this story, so many childrens and moms doesn't have the same luck than Us, I can stop thinking in adji Desir and Madeleine mccann and their families, the pain that they have to go through everyday without knowing where they are, he had a mind of a 2 year old boy like my tarek when he got lost. The lesson learned here is Dont give up on them! continue looking for them,don't understimated Tarek he is more that capable to do so many things in life, don't jugde others moms so easyly not everything that look bad it is Bad, that I always complained How hard is to raised tarek alone without an present Dad and husband and How tired I'm ,but I will prefered a million times feel tired that lost him forever or not have the opportunity to see him grow and laugh everyday. He is my life and the best thing that ever happened to me.
Check the pictures that I post down maybe can help others mom to protect our childrens.
love cecy.