Saturday, February 25, 2012

Sooooo Frustrated!!!!

First of all, I need to let anyone and everyone that may be reading this post today that this is not the typical "smell the flowers... life is sunshine" type of post.

Remember that ridiculous statement that everyone would say to you when you gave birth to your child with special needs..."God only gives us what we can handle".... or how about "God gives special children to special people"! Ugh! I detest, from the bottom of my heart, statements like that! What a bunch of Crap! A parent of a child with special needs has NO special powers! No extra deposits of patience! Nor are we angelic like and the fact that we were given these special children should be looked at as a gift! NO, NO, NO! We are parents, full of trials, tribulations and frustrations like the rest of the world. Just allow us to be parents!

I am so frustrated, tired and just plain exhausted with life right now, I don't even know where to begin!

Typically I don't share these types of feelings; and honestly they don't raise their ugly head all that often... but this past seven to ten days, these ugly heads are sitting on top of my roof, exposed for all to see...

Granted, upon starting Noah on the CMF protocol, I truly expected miraculous changes! Well, on day seven of the P, he developed a really bad case of diarrhea, that then turned into an upset tummy, which then moved on to a severe sinus infection. Now, after over two weeks, he is on antibiotics to fight the infection, etc.
Meanwhile, we have continued to give N the .05 mg of P and increased it on week 2 to 1mg, but we cut back on all supplements, aside from a little fish oil, because his tummy was so upset.

Today was the first day that I reintroduced the vitamins, including his ginkgo supplement. We shall see how things move forward.

I am just so frustrated because at this point in time I feel that N doesn't focus very long on an activity, that he is easily distracted, as well as just completing basic toddler tasks! So frustrating! I know that he can read over 300 words, that he knows all his letters and phonic sounds in the alphabet, and also that he knows his numbers consistently up to 20.

I'm just really tired. I'm tired of his not talking (although my husband says that he is talking... he says ba,ba,ba, mmmmm, lalala, etc) basically where an 18th month old would be! Meanwhile we see an Apraxic speech therapist, THE specialist in the state, four times a week, and not at an inexpensive rate! I mean, come on!!! N is almost 5.5yrs old!!! Give me some words!!!!

Yes I am hormonal, yes my lovely time of the month is coming up around the corner. However with all those disclosers this doesn't make it any easier! N and I were working on a simple shape sorter today... I had to continuously redirect him constantly!!!

Right now I feel like we have definitely digressed vs improved... Only more time shall tell.

However, meanwhile, my little man continues to try to be the best he can be... Here he is climbing a set of stairs at the playground that he could never manage in the past. Its acknowledging the small steps that makes life so important!

Thank you all for listening, thats why I love my blog friends :)!!!

Wednesday, February 15, 2012

Changing Minds protocol - Day 15

Hi there,

It has been a crazy week. Last Tuesday evening, on day 7 of protocol, Noah had a Major Diarrhea blow out! He's been home from school ever since. He has had diarrhea, a little vomit, a slight fever and as of early this am, an annoying cough!

He hasn't been wanting to eat very much, nor take any of his supplements. As soon as he tastes something in his milk, he will gag and not drink any more. Due to the fact that he hasn't had a lot of food/liquid intake, I stopped giving him any supplements as of yesterday to just ensure that he will stay hydrated. I have, however, continued with his fluoxetine, which we increased yesterday from .05mg to 1 mg. Little man has been surviving on yogurt and vegi booty.

I was a little concerned that Noah didn't actually have the flu, but was having a reaction to the fluoxetine and/or ginkgo supplement. Today his bowel movements were typical, (I haven't given him any ginkgo since Monday). So, tonight I have crushed one pill of Ginkgo, (usually I give him 2 pills, 3x a day) and added it to his milk. My thoughts are that I will continue to add the ginkgo back in and in two weeks we will be back to our full dosage.
Well, he just tasted his milk with the ginkgo pill crushed in it and gagged, making quite the dramatic performance! So much for the quick fix :0

We went to the doctors today, his bi-annual endocrinologist appt. and they drew his blood and will check his CBC, just to make sure all is well. However, we also received his growth update... Little man isn't that little! At age 5, he is 39.5 lbs and 42 3/4 inches tall! He is a tall drink of water :)!!! So grateful that his body is continuing to grow at a typical rate... Hopefully his brain cells are as well :)!!!

This past summer we adopted a little puppy from the local Humane Society. She was 9 months old and we were told she was a poodle/scottish terrier mix. Well, about a month ago, we had her groomed and she now looks like a schnauzer. Regardless of her breed, she is the sweetest, most loving dog we have ever had. Her name is Abby, something that Noah could say :), and she and Noah are becoming quite the friends.

Below is a photo of the two, hanging out in the family room. Pure love between the two of them!

Praying for health and guidance regarding little man's supplements and vitamin regimen. Have a wonderful evening!

Friday, February 3, 2012

Day 3 of CMF Protocol...

Happy Friday! Wanting to update Noah's first few days on the protocol adding in the Fluoxetine.

We haven't really noticed any issues and/or changes in Noah's behavior since adding in the F. that we can identify.

He has been tired by the end of the day, but he also does A LOT each day!

On Wednesday, the day we added in the F, he went to school from 8:30 - 11:30 as typical. However, on Wednesday's he stays at school longer: eating lunch with his friends, playing on the playground and then back to school work. At 1:30, he takes a tumbling class on campus for an additional hour. Needless to say, every week, he returns home exhausted. However, he has a half an hour "relaxing" break at home that usually consists of Jack, Mary and Mel (Jack's Big Music Show) until Ms Sarah, Noah's home O/T, shows up for an hour of intense work therapy.
Tired on Wednesday... Yes!!!! Always! So not necessarily due to the addition of F.

Thursday...this was Jacques "birthday", so I had to get up when N woke up. (our definition of "birthday" is the day that either J or I get to sleep in) :) So, on Thursday, N woke up at 5:00 am to go potty, I then put him back to bed, telling him it was still nighttime... he then came out of his room about 15 minutes later. Being that it was Still dark outside, and probably would be until at least 6:30, I brought him into bed with us and told him it was time to go back to sleep. Sure enough... He DID! We slept until 7:45, then raced around to make it to school on time :) Was this additional sleeping in due to the F? Who knows? Maybe Mommy just has that special touch :)
Thursday was a typical day, school until 11:30, then speech from 12:00 - 12:30. He did really well at school; was very focused and he also did well at speech with Ms Amy too. All in all, Thursday was a good day! Went to bed at 7:30 and up at 6:30 - good day!

Friday, waking up at 6:30, he seemed his typical self. However, this was not the typical Friday... We were able to get into Noah's sensory O/T at 11:00, and then he had speech at 1:00. So, he went to school in the morning, leaving at 10:15 to get to his O/T by 11:00. At school as well as O/T, he was absolutely non-responsive. He didn't want to work, either at school or with Ms Aimee at O/T. But, it was Friday and typically by the end of the week, he is D-O-N-E. But Noah's day didn't end with O/T, he then had to go to speech with Ms Kim. At speech he did really well. He was focused and he followed Kim's instructions wonderfully!
At the end of today, he was very tired and overly sensitive. He cried at one point for truly no reason except for J and I not giving him 110% of our attention. Also, it was close to 7pm, so he was obviously very tired.
To bed and asleep by 8:00... seemed to be all typical to us.

So, with the above update, it really doesn't seem to be anything out of the ordinary... Fluoxetine or not.

I wanted to share a photo of N from today... we were driving in the car and he was rocking out to one of his favorite songs...
Looks to me like he is enjoying life, just like he did prior to the Fluoxetine!

Have a wonderful weekend, and may we all enjoy life with the passion of my little man!!!

xoxo Raquel and Noah

Wednesday, February 1, 2012

Beginning Changing Minds Protocol...

"Taking the first step"...

Today we began our first dose of Fluoxetine. A very mild dose of .5mg. If all goes well then we will increase to 1mg in two weeks and continue our observation and dosage increase from there. So we are now on the complete Changing Minds Protocol, minus the Focalin. Since increasing our Ginko and the amounts throughout the day, we have seen a lot more verbal "talking" from Noah. We also are hearing more word approximations. It will be exciting to see what the next couple of months bring us.

We met with Dr. Daniel Kessler on Monday afternoon. He is the pediatric developmental/behavioralist. He was very informative, especially about the medications. That was the final confirmation for us to move forward and observe what changes may occur.

So, on the road we go, with the hopes of a fabulous future for our little man.

Updates to follow...

Raquel and Noah Bryce