First Lost Tooth

This is my last "first lost tooth."   Too soon we will see the last of the tooth fairy at our house.

I took this picture to send to Cameron's doctor since it has been six weeks since his last laser treatment.  She likes pictures since we don't see her between treatments.  So she not only got a pic of his face but also of his proud hole in his teeth.  I thought it was too cute not to post.

He could have another laser in a few weeks but we decided not too.  I think we are done for a year or so.  This time I actually asked Cameron what he thought about having another treatment and he said that he thinks his birthmark is just fine.  So there you have it.

It will be an ongoing process through the years but for now, after 10 treatments in the past two years, we are done.  Hooray!

Funny Funny Cam

I get a kick out of my 5-year old.  And lately I have been remembering back to when my 17-year old was 5.  They are a lot alike.  Full of imagination, and happy and easy going.  Dustin used to dress up in his costumes and wear them all day.  To the grocery store, etc.  And he wasn't "Dustin" he was "Peter Pan" or "Batman".  Cameron doesn't have the costumes but he still likes to get "decked out."

We had Cam's 8th laser treatment last week.  Our neighbor gave him Spiderman socks the night before.  He picked out his wardrobe for the hospital:  his Spiderman pajamas, Spiderman socks, and he put his stuff to do in the car in his Spiderman backpack.  Now I had just done laundry and washed two pair of pajamas cuz I know he likes to wear pj's to the hospital, but  Spiderman wasn't among them.  So I just got a wash rag and washed off the dirty spots (probably syrup).  And his pants had a hole but oh well.

When he was taken back to pre-op he promptly lifted up his pants to show off his Spiderman socks to the nurse who was taking his vitals.  And then he showed everyone who happened to come into his room.  When he got dressed in his hospital pajamas he asked if he could leave his socks on.  The answer was "yes."

The laser treatment went very well.  It was quick because the doc didn't do his neck, chest or ear.  She is done with those parts.  Yay!  He woke up from anesthesia just fine--no emergence delirium--and he didn't get sick.  Hooray!  Healing is much quicker this time and he was mostly pain free.  Yay!  And the biggest news--One more in May and then come back in a year.  Hooray!

Another funny story at the hospital.  We had to wait in the waiting room for an hour and a half! (not funny).  That has never happened before.  Usually its 10-15 minutes or less.  Anyway, there was a play house with a kitchen and play food.  So Cameron was pretending to cook and then served me food, which was breakfast.  He was very good to split everything evenly, even pretending to cut up some things so we could both have the same amount.  After we ate then he got into the car there (the kind you use your feet to move) and said, "Goodbye. I am going to work.  You wash the dishes."  I thought it was very funny.  But later, after he fixed lunch, went back to work, came home and fixed dinner, he told me that I don't have to wash the dishes at night because he does them at night.  Isn't that great?  A "hubby" who cooks breakfast, lunch, and dinner and does the dinner dishes at night.  Not bad.

Back to the Spidey socks--I think he wore them everyday for the next week.  He had shorts on one day with his sunglasses too.  couldn't resist the shot:

A Tough Laser Treatment

Yes, it has already been two months since Cameron's last laser treatment, so we went back to Albuquerque again on Nov 9th.  I have been striving to be positive in all these posts about his laser treatments.  But honestly, I am getting tired of them and they are hard for me.  He is a trooper and seems to know it is just part of his life and what he does every few months.  And never he complains or says much about them.  In fact, after his first laser treatment right after he turned 4, when we came home from the hospital, the only thing he had to say to his Dad about it was that we stayed in a hotel and the room number was "one zero one".

He had a harder time with this treatment, and so I did too.

All went well at the hospital.  On schedule so we didn’t have to wait.  No emergence delirium when waking up from anesthesia. Hooray.  However, the treatment area looked different this time.  Instead of the usual purple, his skin was gray on his cheek and chin.  I didn't see the doctor again before we left the hospital so I didn't get to ask her about it.  (I saw her after surgery but that was before I saw Cameron post-op).   He woke up, ate his orange popsicle and we were on our way.

But sadly, for the first time he got sick from the anesthesia--twice.  But he is my 5th child (and we have been frequent travelers over the years between Utah and New Mexico) so I am a bit experienced in noticing symptoms of a child who is going to be sick in the car.  I pulled over in time.  But we still had to change his clothes in the cold by the side of the road.  Poor guy.

And this time, he hurt.  He has never let me put an ice pack on before and I have rarely even given him Tylenol. But this time he needed both.  We were up in the night in the Lazyboy with an ice pack for a few hours. I finally gave him a second dose of Children’s Motrin (don’t tell) after the first dose didn’t seem to help much, and then he slept.  Until about 4:30 a.m. when I got him another ice pack.  Still though, he didn’t complain or cry. In fact, I heard someone up in the bathroom around 10:00 and found him trying to put a wet washrag on his face, but dripping water down the front of him.  He didn’t even come and get me!  I gave him pain reliever the next few nights before bed and he did fine. It was only that second night he had a hard time.  I suppose the first night he still had some anesthesia in his system.

The doctor told me that they did notice more gray this time and if it still a little gray, make sure to keep the Vaseline on it.  I said it is still a LOT gray.  She said send me a picture.  So I emailed her one.  Yes, she said, it is quite gray.  Perhaps we got more of a response than we might have wanted she said.  She said she may have pushed up the power too much this time since he has been tolerating it so well up to now.  Keep it well lubed to prevent blistering and peeling.  And she would call us in a stronger pain med if he needed one.  (I really like Cam’s doctor, but isn’t it interesting how she sort of dances around with the “mays and mights” not quite admitting a mistake).  So basically, he got “lasered” a little too much.  

And I know doctors make mistakes just like everyone else, but it is hard when is happens to your kid.

I sent her another picture 6 days after.  He still had gray but not as much—it had turned purple. She said it was doing what it was supposed to do, just slowly.  Keep it well lubed and out of the sun. 

After a week and a half he is still pretty purple, with barely noticeable gray. His neck and chest have faded quickly as usual.  But I am thinking that this time the usual 2 week bruising after a treatment is going to last a bit longer.  It will be interesting to see how long it takes to clear up.  And I am rethinking our January treatment appointment.  Because I need a break, and I am sure Cameron could use one too.

And as you read this maybe it doesn’t sound like a big deal and I handled it.  But really it shook me up.  Sheesh, I have enough problems with my anxiety when things are going well.  I went through a lot of emotions last week.  Feeling bad that my baby has to hurt.  Feeling guilty for putting him through this. Second guessing myself wondering if we are really doing the right thing with these treatments. Just a bunch of stuff that maybe isn’t logical, but nonetheless, feeling it anyway.  And feeling a little upset at the doctor, I do have to say. Plus nervous about the gray--and if it blisters and peels, then what? All the while still having to be a mom and get kids to school and dinner on the table and laundry done etc etc.  Feeling a bit overwhelmed with it all.  But I am ‘back on my feet now’ -- I think.

Anyway, enough said…

Still some gray showing on his cheek after 6 days
(his neck is clearing up and the light is skin color, not gray)

And I threw in this photo because it is too dang cute!
It was taken in October by Lydia Jane Images
(the PWS doesn't really show up in this photo but is does look darker most of the time)

Laser #6

We are moving right along with Cameron's laser treatments.  He has #6 on Sept 14.  And the end is in sight!  at least the end for this phase.   Dr. says 3 or 4 more and then by summer he will be done.  With 'touch-ups' once a year or every other year.  His next one is scheduled for November and then his doctor is going on maternity leave (what? you can't be a mom! you are our doctor! you don't have another life do you?) and won't be back until March so maybe he will have a laser by her colleague why she is gone or we will wait until March.

What I want to tell you about is the anesthesia.   He has been waking up crazy and crying the last three times. Emergence delirium they call it. Common in children, especially with short surgeries, and repeated procedures.  He is inconsolable, crying and thrashing until they give him a sedative so he will fall back asleep   Then he sleeps it off and wakes up fine. The first time it happened the nurses came and got me right away and I held him while he cried and kicked for ½ hour until the drugs took effect and he fell back asleep.  They say the kids don't remember it and they are in half-awake half-asleep state and don't know what is going on.  But it is hard on Mom.  The next two times they did not come to get me until he was sleeping again.  I noticed the last time the delirium must have been worse because all the vaseline the doctor goops him up with was all rubbed off his face.  I was in the waiting room longer and it took longer for him to wake up.  It was our longest hospital visit of almost 5 hours.

So this time I spoke up.  If we know he is going to wake up with emergence delirium that seems to get worse every time, than can't something be done about it?  When the hospital called the day before the procedure to give us a time to come in, I requested an anesthesiologist.  I gave them two different names actually.  When I got there neither were working but I got the second in command.  She listened well and had all his records in front of her. Of course she told me this is common.  And I am thinking "I don't care how common it is. Do something about it."  I told her I wanted to be there when he woke up, isntead of the waiting room.

The anesthesiologist came out into the waiting room and got me.  I wasn't just paged at the front desk by the nurses. She was letting him wake up on his own. Usually they reverse the med to wake him up. And she gave him anesthesia through IV instead of a gas. a different med I guess. Usually I don't see the anesthesiologist after surgery, except sometimes to discharge him, so I guess I got special treatment. And he woke up just fine. It pays to speak up.

Here is a pic of him sleeping in the car on the way home.  He was more sleepy this time and fell asleep again as soon as I started driving, so we didn't eat lunch right after we left the hospital like usual, but instead drove about an hour and a half (half way home) before stopping to eat. (He may have slept the whole way home but I was hungry...)

not the best quality, but what do you expect?  I was driving at the time.  he looked so cute cuddled up with his blanket and pj's.  He wanted to wear his pajamas to the hospital.  and he is a 'tough guy' handling everything so well.

Update on Cameron's port wine stain

Cameron turned 5 last month, which means he is starting kindergarten!  He has had 5 laser treatments for his port wine stain in the last year.  He does fine with the treatments and doesn't seem to mind too much, or at least he doesn't say much about it.  It is harder on mom than him. It was kind of interesting last time because we got to the hospital about 20 minutes early, so I drove over to a pond nearby with turtles and ducks.  I asked if he wanted to go to see the ducks and he said "No. I just want to go to my laser surgery."  Not sure how to take that except maybe that he just wanted to go and get it over with.

These pictures are on his birthday, 2 weeks after his last treatment.  Though it isn't recommended to do a treatment in the summer because he needs to avoid sun exposure before and after, we went ahead and did it anyway for insurance reasons.  He faithfully wore a hat and sunscreen--even while playing soccer!

Which brings me to my next point.  Cameron has been on NM Medicaid the past two years.  I know I complained about government healthcare before, but I have to eat crow and say I have loved Medicaid.  It has paid 100% of everything.   It is a little harder to find a doctor and dentist at first, but it has been good for us.  Cameron was on Mediciad because when my husband started his business three years ago and we had to buy private health insurance, we couldn't find a company that would cover Cameron because of his birthmark. We didn't qualify for Medicaid in Utah, but when we moved to  New Mexico, we did.  But the business is doing well and so we are over income limits and no longer qualify. His coverage ended on July 31.

I was a little panicky because I found out that NM doesn't have a health insurance pool for kids who are uninsurable.  And if you do not have health insurance for 63 days or more, the pre-existing conditions apply.  So I needed to find insurance fast, and from previous experience it isn't a fast process.  However, I found out that the healthcare reform has changed things a little bit for kids in the last three years--apparently now a child cannot be denied on a family plan.  And I also found a company in NM that had a child coverage guarantee.  And it only took a few weeks for it all to go through.  Though we may add him to our family plan later, for now he is covered through the child coverage guarantee with Presbyterian Health.  However, the premiums for him are more than double the base premium, but we are happy to have him insured again.  Of course the question remains whether they will cover his laser...but we will fight so they will.


Here are some pictures a year before he started laser

and today--his first day of school! (gulp! my baby...)

Happy Valentines!

My little Valentines fashion girl...complete with side ponytail, cuz apparently that is cool in her first grade class.

  

Don't the tights and the red shoes (that were her brother's) just make the outfit?  

The kids were excited for their Valentine's parties at school today.  Well, the elementary and preschool kids.  

Cameron and I went to Albuquerque last Wednesday for another laser treatment.  He did so good.  While we were waiting to go into surgery he did ask if I had any food in my bag.  Poor kid.  But we went to McDonald's afterwards so it was all good.

 And, now that Valentines and Cameron's 3rd laser are over, bring on SPRING!!! we are ready!!

Goodbye January

It is almost February.  In fact, tomorrow is February.  But I want it to stay January.  'Cause in February I have to take Cameron back to the hospital for his third laser procedure on his face.  The laser is doing wonders as we can already see a difference after only two treatments.  Cameron doesn't seem to mind going to the hospital too much.  In fact he told me that he likes the hospital ok, and who wouldn't cuz everything is about him and he gets to wear funny pajamas, watch movies and eat popsicles, but he said he doesn't like waking up early and not eating. He can't eat because he goes under anesthesia.  And he is asleep before they put the IV in.  so it is not too hard on the kid, but it is hard on the mom.

I know I have been blessed not to have any serious medical issues with my family.  Sixteen years of parenting and up until last year we had one broken arm (not Andy), one set of stitches (not Andy), and one concussion (amazingly still not Andy).  And Janessa was born with a urinary tract problem which did require tests at the hospital every year and nightly antibiotics, but she outgrew it by age 2 1/2.

Then there was 2010.  Not only did we meet our insurance deductible, we also met our yearly out of pocket (none of it maternity).  In March my hubby pretty much shattered his elbow requiring 13 pins and a plate to put it back together and physical therapy to make it work again.  Everything went fine and he healed well.  Brennen got pneumonia in August and luckily didn't require hospitalization, but was a very sick kid for 2 1/2 weeks.  In September Cameron had his first laser procedure, Andy had his tonsils and adenoids out in October, and the day before Thanksgiving another laser for Cameron.  My anxiety level or something went way down after Thanksgiving knowing I was done with hospitals and doctors until February.  Yet, I didn't have too much time to relax because thrown into the usual holiday chaos was a family trip to the Dominican Republic.

I loved January.  And now January is over...

To all you moms out there who deal with medical issues and hospitals on a regular basis, including my sister, you are my heroes!

Cameron posing for some pictures before 2nd laser surgery, Nov 24, 2010

Super patient!

Eating a popsicle after surgery 

Cam-Bam

What a CUTE baby!!! 

Sometime during all our summer fun, Cameron turned 4!  He wanted a Spiderman cake.  

And we took him to dinner at "Chinese" per his request.   My baby is growing up.  He is so fun.  Loves Honeynut Cheerios and would eat them for breakfast, snack, lunch, snack, and dinner if he could.  He loves to dress up--reminds me of his older brother Dustin.   

 

 The bouncy toy he got as a gift.

Being silly one day 'dressing up' with a hat and beard and necklace.  I had some great shots of him and his dress-ups but they are on my lost phone.  He particularly likes hats.  He wore his wizard hat to the store and the library one day.  He put smiles on lots of peoples faces with that.

This fall he started laser treatments for the port wine stain on his face and neck.  He will have one every two or three months for a year or so.  Kind of a wait and see thing as to how many treatments.  We go to Albuquerque to the UNM Children's Hospital.   He is put under anesthesia.  From the time he went back to the OR and when they came and got me while he was waking up was an hour.  Not very long.  He looks very bruised at first but the bruising goes away pretty quickly and should all be gone after two weeks.

being silly at the hospital before the procedure

He seemed okay with everything.  His face seemed to hurt when I had to put the vaseline and sunscreen on and when he took his shirts off, but other than that it didn't seem to bother him.  The day after I asked him if he wanted to go to school (preschool) and he said "Well, I can't go to school with dots all over my face!"  Very cute.  

One day after  

 

One week after

 

The goal of the laser is to lighten it up, (make it less noticeable), but also to prevent further complications and tissue growth later in life. 

Government Health Care? Really?

I have a son on Medicaid (government healthcare) since he is "uninsurable" because of the large birthmark on his face, meaning private healthcare won't take him.  We haven't used Medicaid yet since he has been a healthly boy.  This past week I decided I needed to get him into the dermatologist because he hasn't been seen in over a year.  Laser surgery is in his future for his port-wine stain--both for medical and cosmetic reasons.

(note--we have moved to a different state so I need a new dermatologist for him)

This is what I found out.  It is very hard to find a doctor who takes new patients with Medicaid.  There were no local dermatologists, or any in the next big town an hour away who were taking new patients on Medicaid.  I am welcome to come in and self pay, one office said.  So I went with Albuquerque (three hours away).  I was told I needed a referal for because Cam is on Medicaid.  I called the Medicaid office and they told me he does not need a referal as long as the doctor is in our network.  Check the internet for doctors, which I had been doing.  In fact, one office I called from the internet said they do not take Medicaid at all and didn't know why they were on the provider list.  I finally gave up on dermatologists and decided just for a pediatrician.  I figured Cam is due for a well-child check anyway.  And then I would maybe have an easier time finding a dermatologist if I had a referral and the pediatrician could recommend someone.  So great news-- I found a local pediatrician who is taking new patients on Medicaid!  However, the soonest appointment I could get is in the middle of May, because this isn't a sick visit.  I ended with that and decided to try a few more pediatricians or family doctors next week to see if I could get him in any sooner.  I am not waiting until May.  I will just say he needs to be seen because, I don't know, his face is hurting?

Government Healthcare?  Really?

Cameron's Port Wine Stain

I have mentioned before that my beautiful soon to be three-year old, with gorgeous eyes and long lashes, has a fairly large birthmark on his face. A port wine stain.

I don't know a whole lot about port wine stains (PWS) except for the info that dermatologists give us. Which really isn't much. His face is asymmetric, the side with the birthmark chubbier. This is common we are told. The MRI done when he was one concluded that it is superficial only--not deep into the tissue. Of course what tissue, I don't know, because obviously it is in the skin tissue, or does skin not have tissue? Anyway, there are no lesions on his brain either, which is good because facial PWS are often associated with Sturge-Weber syndrome. I don't know much about that either except that the PWS somehow involves the brain and can causes seizures.

He has a speech delay also. This is not associated with the PWS. Cameron looks like and has so many of the same characteristics as my 12 year-old Brennen, and Brennen was a late talker too. Thank goodness, though, Cameron is more laid back so his speech delay has been much easier to handle! The past six months with speech classes we have been focusing on getting him to use words. To "get" words, as they say. His comprehension score was way high, but expressive speech way low. He can understand but not speak. I still don't understand how he cannot "have" a word which he understands. Anyway, now he speaks sentences and such. We just don't understand much of what he is speaking. Now the focus is on articulation--pronouncing the sounds correctly.

Since we have started articulation, the speech therapist has noticed his tongue is asymmetrical (due to the PWS), which is part of the reason he is having a hard time making the right sounds. Also, he tends to hold his jaw to the right, which makes him look like his jaw is misaligned. But the doctor said his jaw is fine, it's just the muscles. And he doesn't open his mouth very much while talking. Having said all that, we are working on strengthening and making him more aware of those muscles on the left side of his face and tongue--oral motor exercises. We do fun things like drink out of curly straws, lick pudding off our plates, and chew licorice to exercise those muscles.

Because some of the articulation issues are from the PWS, I did a lot of research on the internet lately about PWS. I was so excited to find a website called birthmarks.com. It has other people's stories about their PWS (and other types of birthmarks) and an online support group. I don't know anyone personally with child with a port wine stain so this is great! And as we are planning to do laser surgery beginning when he is four years old, it is nice to be able to read and learn more about it through others' experiences. And also learn about what to expect as he grows older.

What my research made me most aware of however, is that we, or rather Cameron is truly blessed with the birthmark that he has. It is not around the eye, which can cause optical problems, it does not involve the deep tissues which can swell up and cause deformity, and he does not have Sturge-Weber Syndrome. And I also discovered that there are so many children born with other types of facial deformities that I didn't know existed. They have so many more challenges than Cameron will ever face. I know that it takes special spirits to deal with birth defects and these people have a special place in heaven. I have been humbled and grateful for the small challenge given to my son and me, instead of what could have been.

Insurance Woes--Denied Again

My sweet little Cameron has been denied insurance by yet another company. The fourth now. And the state CHiP wouldn't take us either because we apparently make too much money. There is the other state program we can apply for but that will run us $300 something a month.
(In July we had to apply for private insurance because we are now self-employed).


Why was he denied? Because of a birthmark on his face. Okay, so it is a large birthmark. It is known as a port wine stain. And if you want the technical jargon it is a hemangioma along the trimengial nerve on the left side of his face and his chin and part of his neck. But it is a birthmark. A birthmark is concentrated and dilated capillaries near the surface of the skin. The doctors have told us that there is no medical concern. When he was 16 months old the dermatologist at Primary Children's Medical Center recommended that we get an MRI on him to make sure that it is cosmetic only. We did. The MRI said that there are no underlying vessels in the tissue and that everything looks normal. Yet in hindsight, had we never gotten the MRI the insurance companies would not have know about the port wine stain.

I worry about this not just for now, but as he gets older. Will he ever be able to be insured? Is he going to end up having to pay enourmous premiums just to get covered? He will eventually have laser surgery to remove or lighten the mark. Maybe after that we can get insurance for him. But that won't be for two or three years. In the mean time I guess we need to keep in from being an active 2 year old who likes to climb and run and jump! Yeah, right!