The Lane Brothers

The Lane Brothers are my working out secret. 

I am in constant movement because of them.

They are handful!

Here is Tommy enjoying the moment

because he could reach the crackers

he shouldn't eat because of his food sensitive.

Here is Francis dealing with the 

guilty feeling of destroying his bed. 

Today is the World Down Syndrome Day

Many organizations that support people with Trisomy 21 (Down syndrome) are celebrating the value, acceptance and inclusion of people with Down syndrome in honor of the World Down Syndrome Day. This include our local Down syndrome Parents Support Group, that has become very popular among other communities due to the great support and sense of community. They are having a party today to celebrate the world Down syndrome day as well as celebrating the birthday of 3 little ones with Down syindrome. I won't be able to attend, but I will be with them in heart.

Even when there are testing and screening that are forcing parents to make a imposed decision of termination of the pregnancy.  I don't judge them because the medical community makes a lot of pressure, this is the reason we were firm since the beginning and we told that we loved our unborn baby, regardless the results. So we just wanted to make sure our son would have the proper care as soon as he was born if something was wrong. Unfortunately, this is not how many people take it. But regardless all the high rates of termination of pregnancies, some how these kids bring us together. These kids bring the best of all of us. These kids prove to us the impossible can be possible. These kids have made the world united to celebrate that they are part of our life. 

The European Down Syndrome Association and Down Syndrome International were the ones who proposed the World Down Syndrome Day on the 21st day of the 3rd month as a symbolic manner of representing the triplication (trisomy) of the 21st chromosome that causes Down Syndrome. So the world began to celebrate this date since 2006. Howsoever, it was until December 19, 2011 when the United Nations declared officially March 21st as the World Down syndrome Day. Yes, it is a celebration around the globe! You can visit the World Down Syndrome Day website and find what events are hosting near you to celebrate (Panama has 4 events and the United States has 16 events). 

We are so proud of Tommy. His extra chromosome is part of him, but it is not who he is.  He is funny, regardless his developmental challenges that have gotten worse in the last past two years. He is a cute kid, the futures of the extra chromosome blend in really good with the heritage facial futures from mommy's genes (That kid looks a lot like his mama).  He adores his little bother and it is so cute when he says "brother" and hugs Francis. Since he was a newborn, there was not doubt that there was a special connection between him and daddy. Today that connection between them is getting stronger. Everyday I notice something positive or he says something I have heard before. He is blooming! 

HAPPY WORLD DOWN SYNDROME DAY!

Great Celebration in Catholic Community/Church

We all are very excited with the new pope, POPE FRANCIS I. My husband and I are so happy the name he showed is Francis, the name of our little boy (Both of our kids have Catholic names). The excitement in the Catholic community is amazing. POPE FRANCIS I is just a simple and humble person,  but he also represents inclusion. His mom is from Argentina and his dad is from Italy. He comes from a Latin America country, so we, Latin American people, are extremely happy we have a Pope that talks our language and truly understand the disadvantage of poor people. I am so humble! He will bring new changes and hope for Catholic people and Non-catholics around the world.

Enjoy the Photo of Francis, our little angel,

 with Pope Francis I

 

Finding myself again!

Over the past 5 years, I have experienced many changes and emotions in my life due to Tommy's diagnosis. In the last past 5 years, I have been working with him in every way possible, but specially in the last past 2 years. I am exhausted! Howsoever, I am happy that all my investigative and therapeutic work at home is starting to work. I am not expert in child development, but  as a mom, I am trying to do the best and beyond for my son.

I began this year with one resolution in mind. Dedicate time to myself. This doesn't mean I don't want to be around my kids. I love to be around them. But it means, spending less time in my investigative work, watching more TV, going out more with my husband, friends and other moms with kids with T21. To be myself again! I got lost among therapies, doctors appointments, working full time, being an advocate and trying to be a sister, a daughter, a wife and a mom. So I forget about myself to get the time is needed to do everything that it is in my action plan for helping Tommy. But so far, I am sticking to my resolution.

Since the beginning of this year, my husband and I plan a date every month. I had taken us 5 years to get to this point, but we love each other and we are committed to each other, regardless everything we have over our shoulders.  I feel more relaxed every time we spend time together.

Tonight, I went to a moms night out from moms with kids with T21, sponsored by Albert Pujuls Family Foundation. We all had fun! And of course we talked about our kids and their challenges, somehow we all were connected. It just feels good to be able to talk openly about our fears, anxiety and worries even when we just met for the first time. I deeply grateful with the Albert Pujols Family Foundation for organizing this event because I felt myself back tonight.

Rescuing my son: Progress after neurotransmitter treatment

I never thought that an individualized nutrition plan would be the most important key in my son's healing and the best way to protect his brain. I started to care about nutrition since I was expecting Tommy; but now, I am obsessed with it. Here is Why:

I made a list of some behaviors or changes we gradually noticed on Tommy's personalities during the hospitalization as well as  days after being realized from the hospital (Feb. 2, 2011) that were still present by the time the treatment on October 16, 2012. So you can understand how much he was affected with this hospitalization experience. 

• Regressions in his overall development
• Signs of irritability
• Lost of Motivation 
• Dramatically increase in Repetitive Behaviors
• Muscles weakness noticed at the hospital. But it was more noticeable when he couldn't walk up the stairs by holding the rial when he came back form the hospital on Feb. 2, 2011.
• Decrease on emotions noticed after the hospitalization, but progressively improved in the first months of 2012 after Chiropractic treatments and nutritional intervension. But I still felt the emotional skills were not as strong as before.
• Lost of communication skills, including gestures.
• Barley gaining new skills (his development completely stopped from my point of view).
• Trouble sleeping. Waking up at the middle of the night or having problem falling sleep at night, which started by the end of January 2012.
• Appetite issues, which started by the summer of 2012.

4 month after the Neurotransmitter treatment began

We have our followed-up appointment on February 18, 2013. We have a lot to report since Tommy began this treatment. 

Regressions has stopped. We didn't noticed more regressions after we started the nutritional intervention by the end of January 2012. But Tommy got sick by the end of November 2012 with a cold. He was so sick that  I took him to the doctor. So he was seen by the nurse practitioner because his doctor wasn't able to see him. She said he had a sinus infection. So she prescribed 'antbiotics.' He didn't go to school for about a week. After a few days he was back to his normal routine, his teacher emailed saying she was observing regressions, mainly, in auditory processing. I knew immediately it was due to the antibiotics. Why? Antibiotics increases SEROTONIN, which regulates auditory processing. So I quit the antibiotics. I remembered when the nurse practitioner began to ask about the symptoms, the only symptom she fund to link it to a sinus infections was his puffy eyes, and of course the congestion. I immediately thought his puffy eyes was due to the blefaritis around his eyes that make that area more sensitive. But I still wanted to believe in her diagnosis.  He had one similar symptom to a sinus infection, but it wasn't. He was very congested because he got dehydrated which make him more miserable (mommy's diagnosis). So We got a natural nasal spray and I began to realize mucus three times a day. He completely heal without the antibiotics, and the best of all, the regression didn't go further. I know deeply in my heart, Tommy has sensitivity to antibiotics and maybe to other medications due to his genetic disordrder and heritage gens from me. 

Irritability under control. He is not getting irritable out of the normal of a child of his age and he is self controlling really good. Previous week of starting the treatment, his teacher emailed me saying that Tommy was aptenting to bite others. Two weeks after the treatment his teacher emailed saying she was not observing this behavior anymore. Tommy is happy and being silly to makes us laught as he used to. I was missing this part of his personality so much.

Tommy's repetitive behaviors have decreased. There are two predominant repetitive behaviors, which make things a little easier in redirecting him. But these are quit hard to break because they have been present for long time. These two behaviors where the first one I noticed, but I will help him to get over of those behaviors. 

Physical skills and endurance has improved. Tommy's energy level is more stable, it has been a battle keeping up his endurance, but it is coming along. Read the email sent to me by Tommy's private paid OT:

Hi Rosa, I just wanted to give you an update on Tommy's therapy session. He worked so hard today! We started by jumping on the trampoline. He was independently jumping for 5-6 minutes. He demonstrated increased affect and interaction while we were jumping and singing songs together...Lastly we ended with swinging and climbing in the spiderweb. I was impressed by his ability to climb and navigate the web as it requires endurance and core strength. Please let me know if you have any questions. Tommy is such a joy to work with. I'm so excited to be part of his team!

Tommy's motivation is getting back —without motivation, any human can function. It became a nightmare every time I tried to do structrue activities with him because he got into a withdraw or fly mood, so I stopped working on structure activities for a year. He currently likes to do activities on his little table at his bedroom before bed time as it was previous to the hospitalization. He is more willing to try to do things on his own, which is resulting in gaining new self-care skills. 

He has gained quicker cognitive skills in the last past 3 months. I am in the process of teaching and not testing; therefore, I know he is learning because during free play or in spontaneous moments he shows it. I don't know yet how much he truly knows, I am just exposing him to a variety of concepts, and try that he can learn something new everyday as well as making modifications around the house to create pathways in his brain 

Tommy is more affectionate. The most exciting to report in his emotional development is that, on Sunday, Feb. 25, he hit Francis on purpose with a truck toy, so I got mad at him. He was in time out. Daddy was at home and he got into the conflict zone, so I left Daddy handle the situation. Daddy had a talk with Tommy, suddenly Tommy hugged Daddy, put his head over daddy's shoulder and said "SORRY" without any prompting. If you don't follow my blog regularly, I have been working on helping Tommy express this feeling because I know he is aware of this feeling, but he doesn't have the words to express it. So I couldn't be mad at him for so long (I love that boy with all my heart).

Non-verbal and verbal communication skills began to emerge again. Tommy's vocabulary and receptive language has increased. Which is reported by his Speech therapist at school. 

He is receptive language has improved in matter of weeks, which from my perspective, it means the SEROTONIN is getting down because receptive language and auditory processing are linked. I began to target SEROTONIN though nutritional intervention.

He is like the male version of sleeping beauty again.  He is not having trouble sleeping at night anymore. We can be loud, move him, turn the light on and he keeps sleeping. 

Better appetite. I will say that he is almost 80% of how it was previous to the hospitalization. Tommy was becoming a picky eater. This is a red flag! picky eating is becaoming acceptable in our sociaty, but not it is always part of a child develpment. Peaking eating maybe indication that something is wrong, specially when you have a child with good eating habits.

We don't know for sure how many more months he will be in this treatment. We will retest and we will know the results in a few weeks. The goal of the treatment is to get neurotransmitters in normal or near normal levels for a proper brain function. He will eventually be out of this treatment. 

"My rescue plan is working! We feel Tommy is just back home after 2 years. Every day, we notice something positive on Tommy. Not just my husband and I, other people around him.  It warms my heart when I see him being silly and giggling because he makes me laugh or when he suddenly comes behind us and give us a hug. Many of the skills I thought were gone it seems they were just in stand by. I am not so surprise about Tommy's progress because it is the child for who I have been fighting in the last past two years. This is the child I was missing! I am the one who has formulated the action plan for healing my son and the one who investigate the science behind everything we are doing for helping him. Yes! I am amazed of the results of the treatment because it proves to me there are non-invacive ways to a successful healing, which are making Tommy's development to escalate. Since I was three months pregnant with Tommy,  I just pray for wisdom and to meet the right people in our path that can help Tommy to reach his full potential. I don't ask God for a miracle! My son is already a miracle, surpassing many odds that have been put on him due to his genetic disorder."