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.

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.

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!!!!

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!

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".

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.

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

My gift from the boys......almost!

My gift from my boys was going to be pictures all together. I guess given Cameron's age , we did pretty good. I hope to some day get all of us together looking at the camera.

Just to make sure we didn't miss any of the childhood illnesses........

Collin has croup and double ear infections. Connor and Cameron are getting the first symptoms of it and will most likely have 3 kids all with croup. So, I think I will just print out a big list of the remainder childhood illnesses to be prepared for when it hits us. Before I enrolled Collin in preschool I always said "my kids never get sick" and now I say "If it's out there, my kids will pick it up".

Looks like I will be housebound for a bit!!!

Results from Allergist

The Hive/Hsp incident in January was Serum Sickness:

Serum is the clear fluid portion of blood. It does not contain blood cells, but it does contain many proteins, including antibodies, which are formed as part of the immune response to protect against infection.Antiserum is a preparation of serum that has been removed from a person or animal that has already developed immunity to a particular microorganism. It contains antibodies against that microorganism.
An injection of antiserum (passive immunization) may be used when a person has been exposed to a potentially dangerous microorganism against which the person has not been immunized. It provides immediate, but temporary, protection while the person develops a personal immune response against the toxin or microorganism. Examples include antiserum for tetanus and rabies exposure.Serum sickness is a hypersensitivity reaction similar to an allergy. The immune system misidentifies a protein in the antiserum as a potentially harmful substance (antigen), and it develops an immune response against the antiserum.
Antibodies bind with the antiserum protein to create larger particles (immune complexes). The immune complexes are deposited in various tissues, causing inflammation and various other symptoms.
Because it takes time for the body to produce antibodies to a new antigen, symptoms do not develop until 7 to 21 days after initial exposure to the antiserum. Patients may develop symptoms in 1 to 3 days if they have previously been exposed to the offending agent.Exposure to certain medications (particularly penicillin) can cause a similar process. Unlike other drug allergies, which occur very soon after receiving the medication for the second (or subsequent) time, serum sickness can develop 7 to 21 days after the first exposure to a medication. Blood products may also induce serum sickness.

So, basically Collin will not be able to have any penicillin's.

He is allergic to Birch and Alder and that is the cause of all the eye issues!

I am happy we finally got some answers.

My favorite pic of the day!

I was thinking.....how funny would it be to post this pic in 20 years. I just love baby hands and feet, don't know many who don't! This pic has it all, it's sooooooo yummy!

It's sooooo cold

Ok, it's April so why are we getting snow! Thursday we go to Issaquah for allergy testing. Yakima was 2 months booked out and still could not get us an appointment. So, off we go! I am scared to tell Collin what he needs to do! I am hoping this will shed some light on all the eye problems he has been having. If anyone wants to meet up with us, let me know! Thursday at 2:30 is the appointment.

Can someone buy me some ear plugs?

So, it seems the volume has been turned up in the Davis houshold. With Cameron and his new pipes and Cooie with his, it's one crazy house. The boys are doing good. Collin is my sweet loving one, Connor is growing up fast and talking very well now. Cameron is rolling all over the place. He can go from room to room if you don't watch. I guess this means "crawling" is in the near future. Hope everyone is doing great and enjoying the spring weather!

Just got the results from Cameron's ultrasound

Cameron's ultrasound came back and all is looking good! We could not be happier at this moment. So, we took some pics to show just how happy we are!!!!!

The latest in Cameron's journey with Hemi

Cameron had his first ultrasound today! The ultrasound tech seemed very pleased to be dealing with such a sweet little subject. She put the goo on his tummy and took the pictures of his kidneys. Now, I wait for the results of this test! The online support group has informed me of the importance of a blood test called AFB that needs to be done every 6-8 weeks. Yet, one more test I need to tell my Doctor to get for Cameron. This is TOTALLY something I must tell the Doctor about. The one Dr. that diagnosed him never mentioned this blood test. I guess it's to make sure of a certain tumor/cancer that is rare but hemi kids are more at risk.

Cameron wiggled, rolled and even came up with a very interesting grunt while all the probing was happening. He better get used to it, since he will be doing it for every 6 months until age 3 and at that point it decreases.

Collin really loves the movie toy story and went on and on about getting a woody. Here he is!

Cooie is pluggin along. He has been enjoying playing with play dough. His new favorite thing to do is to take a trip to the pet store and look at all the fish.

I cannot stop laughing.....thought you may enjoy this!

Grammy stopped by while I was taking some pictures of the boys. She saw an opportunity to get a picture with the grandchildren..........so she thought! Thank's to her visit, I am in stitches! HEEHEHEHEHHHHEEEEEEE

Oh, and yes that's another mark on Cooie. A black eye, can you even believe it? Playing at the playground last Sunday and he fell on a stair. I am buying him a helmet.

Let's lighten the mood, shall we!

My sweet little baby Cameron

The conclusion from Cameron's Doctor visit today was what I dreaded to hear. He has Hemihypertrophy and will have an ultrasound to check his kidneys next. Here is a link with some great information if you wish to find out more about this. This seems to be a "take it day by day" thing. So, for now I am fighting back tears to get thru it. No matter what he is happy, loving and growing otherwise normal baby. With any luck or the power of God, this will be isolated to his arm. I was told if his leg grows a certain length too long he will need corrective surgery.

http://www.hemisupport.com/

Can you feel the love?

The bond between these two is so cute, I just had to share! Going to Dr. appt. tomorrow to have Cameron's arm looked at again. Will post tomorrow to keep this updated.

Collin gives me a nice smile.

Well, Collin is doing great! He is enjoying preschool on Tuesdays and Thursdays and always talks about one particular girl in his class. He is always bossing Cooie around causing lots of loud ear shattering screams. Collin is still like he was as a baby, just loves to laugh. I am so happy he is over his sickness. We are still "waiting" for an appointment for an allergist who seems months booked out.