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Tuesday, May 27, 2008

Cameron saw the Genetic Counselor today.


Today was the Genetic Counselor visit.

Here it is simply put:

Cameron does not appear to have any other "syndromes" usually associated with having Hemihypertrophy. Good news, already suspected that.
The affected parts of his body is mainly his arm and mostly in circumference.
We will be refered for the 6-8 week AFP testing.
We will continue the ultrasounds every 6 months if not every 3 months. Still undecided about that. We may also have the prev. ultrasound re-done since it appears they may not have done it properly.
He will see a Genetic Physician in Seattle to conclude the findings of the diagnosing doctor and the findings of the Genetic Counselor.

The lump on his skull was the plates growing together and not a tumor. She said sometimes that happens and it's nothing to be alarmed about.


Thank you for keeping Cameron in your thoughts and prayers. He is now army crawling very well and learned how to wave and say HI in the cutest little voice I have heard.



Sunday, May 25, 2008

I've got my eye on you!


Just kidding! Having a good weekend with my guys. I took Collin to speed racer today. It was a mommy and Collin day. He is such a wonderful date! It was a cute movie.
Cameron has his appointment with the genetic counselor Tuesday. It's all I can think about. I keep worrying he has a brain tumor because his left frontal skull has a larger lump as opposed to the right. I am HORRIFIED! I suppose it could just be nothing and all this pain in my tummy could be for nothing. I HOPE AND PRAY!!!! I just can't wait to have him be seen by someone who knows a little something about this condition.
My house is a mess and I just don't care, infact I don't care about anything until he's ok! I will post as soon as I can on Tuesday.

Saturday, May 17, 2008

A cute idea I saw on my favorite site.


Here is a card I made inspired by my favorite photography/scrap site. We are going to give this card to Collin's teacher along with his favorite book. I am loving this digital card stuff. I am going to make some cards for purchase for my photography customers. Fun, fun, fun!!!!

Friday, May 16, 2008

It was HOT today in Yakima!





We enjoyed a day of fun by the pool today! Kiddie pool that is.


Another Collin story that I thought I would share.


He was passing by the television the other evening and America's funniest home videos was on. The clip was of a little girl yanking out her front tooth with a string. As she would tug, she would scream. He watched the clip and very concerned walked up to me and said "mommy, I don't want to loose a tooth......I really like my teeth". I know he knew about loosing teeth because I had talked to him before. It was almost like he realized for the first time that this was quite real. I asked him if he wanted the tooth fairy to visit and leave money under his pillow and his response was simply No!

Tuesday, May 13, 2008

This morning as I struggled to get out of bed...

I heard Collin say to Connor "hurry the dragon is coming to get us".
Connor said "oh no". Collin said "I am going to get him with my morning breath".

Monday, May 12, 2008

I hope everyone had a wonderful Mommy Day!






Here are some of my favorite pictures from mother's day weekend. Hope everyone enjoyed the weekend.

Thursday, May 8, 2008

Doctors, doctors and more doctors!


So, I am finding it hard to keep plug in along with all the health issues that still need answers. I finally set up an appointment with a Geneticist here in Yakima. I made a special appointment about a month ago with Cameron's PCP to discuss the further testing I feel absolutely necessary for Cameron's well being. To this day I have not heard back. Despite numerous attempts to get the "answer" as to if his PCP felt it necessary. I finally called and set the appointment up myself. Let's just cross our fingers and hope that when the PCP receives the "referral request" they just take care of it.


Is this neglect? You tell me what you think......you can comment on this section of my blog. I think that because Hemihypertrophy is a disorder of the body's normal controls of growth, people with this condition can have a higher rate of cancer. If these "cancers" are not detected in time it could be too late. My proposed care to the PCP was instead of ultrasounds every 6 months he should have them every 3 months (a normal time frame for a child with this disorder). Also, I questioned the 6-8 week blood tests and why no one feels it's important for him to have. The Dr. said because the diagnosing Dr. felt the ultrasound was sufficient. Now understand, this PCP has NEVER had a patient with Hemi. So, why am I still with him.......because with-in my health plan the options don't seem much better. But, believe me I am working on it.


On a side note, Cameron is doing well. He is sitting up all by himself and just as happy as can be. The geneticist we are seeing at the end of May will hopefully be able to answer all my questions. One I really want answered is if they think this is isolated hemi. 1 in 86,000 people have isolated hemi.
So far, what I have learned from all the issues with Collin and Cameron is to take action for them since the doctors will not. I am not just angry and wanting my kids to get special care, I just want answers. Is that too much to ask.
Collin:
Was covered head to toe with an uncomfortable rash and to top it off his joints were in so much pain he screamed when we moved him. Even after being admitted to the hospital they would not officially diagnose him. It's hives, no it's HSP no it's Hives. 3 Er visits, 1 admittance to the hospital, numerous visits to the PCP, 1 visit to Children's is Seattle and a completely different doctor in Yakima. Guess who finally figured out what Collin had..........Leslie his Grammy!!! They dropped the ball on all levels. They sent our info over the allergist with a 2+ month waiting list. No rush, just hung us out to dry. I had to make the appointment in Issaquah to see why Collin was getting sick every other day with anything and everything. Even now, it's not a closed case, because.....can he have his immunizations? Do I trust anything that comes out of the Doctor's mouths.
Collin is doing great and surprising me everyday! If I don't take some time to breath and let some of this heartache just sit on the sidelines, I may miss out on my kids. Already, I feel my tolerance has changed due to my inability to cope. I MUST get control of myself a fix this! Any suggestions on how to change my attitude?
Thanks for your prayers and good thoughts.
Love,
April