ayden t. camacho

Tiny Trio Birth Announcement

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preparing the soon to be big sister

baby & me - followup

had my ultrasound last week. baby is looking good. he's measuring at the 50 percentile. fluid is good too. his est. weight is about 5 lbs.

today I saw the hematologist because my blood paletes (sp?) are still dropping. Saturday CBC (complete blood count) showed that my palates dropped to 106. week ago, they were 110. I had more blood work done today. the hematologist added some other stuff. she explained that everything else, in my prior lab work looks good. it's only the palates that are dropping. if my numbers get too low, then they could treat me with steroids that will boost them BUT can cause my blood pressure to go up. If they drop below 50, then the baby will have to be checked after birth to make sure his are ok. right now, it's too early to start treating me. the only thing she's recommending right now,  is to continue the weekly CBC. Again, the only concern with having blood palates below 80-100 is me getting an epidural and I guess that would also be a problem in case of an c-section.  they would have to use general anaesthesia.

my blood pressure this morning was a little higher than normal. first one was 140/80, then she redid it with the manual cuff at it was 130/80. my normal numbers are in the 110/60. they are keeping an eye on that. plus I have my OB weekly appointment this Friday. I told lalo last night... Elyse was born at 36 weeks due to my blood pressure being at 140/90... i'll be 36 weeks next week and today my BP is high! It could also been high just because i was a new appointment.  it's called white coat syndrome.  Alex has that.  he's BP gets high whenever he has a doctor appointment.

I'll be following up with the hematologist next week.

an update on baby & and me... :)

Week 33
8 months pregnant.

Today I finally got to meet my OB. Since I changed practice a couple of months ago... I hadn't chosen an OB. I did meet everyone else at this place.

She wants me to start coming in every week to get my blood pressure checked and urine protein (for preelcampsia since that was the reason Elyse had to be born early). Another little problem I'm having is that my blood work is coming back abnormal. My platelets keep coming back low. Today I had my fourth blood drawn. Seems that if this is low again, I will either see a hematologist or continue to do weekly blood drawn.

The weird part is that low platelets are usually associated with preeclampsia but in my case, my blood pressure and protein in the urine have been normal. That's why it's odd and I might have to see a hematologist.

Other problems associated with low Platelets: Thrombocytopenia, when the blood doesn't clot. Not good because i could bleed to death during the delivery. BUT my levels aren't that low.

I also know that I wouldn't be able to get an epidural if they are below a certain number. Which I still haven't decided if I am. Some of you might know that with Elyse, I developed a horrible allergic reaction to the adhesive they used when I got the epidural.  It was the first time I had one, so I didn't know.  My back look like I had third a degree burn. It was horrible. Just the thought of going through that again... well i rather go through the labor pain. BUT i'll be at a different hospital, different OB... so we'll see. I've been told there are other types of tape I can use.

Anyways. Next week, I'll be getting an ultrasound. We'll be checking the babys growth and fluid. Looking forward to that. :)

Funny

Yesterday our pug was making some weird noises. Like she was having trouble breathing. Elyse got concern. She asked me what was wrong with Boo Boo. She asked a few times, I told her Boo Boo needed to blow her nose. :) So what does Elyse do? She gets up, goes to the bathroom, grabs some tissue and tells Boo Boo to blow her nose. Since Boo Boo wasn't listening to her, Elyse brought the tissue to me, so I had to "help" Boo Boo clean her nose.

Vision

Elyse had her eyes checked and her vision has improved!

Her left eye is now at 20/30! Three month ago, she was 20/40. Dr. Curnyn was going to reduce the treatment, but she changed her mind and said she wants her to get to 20/20. We will return in October and hopefully by then, Elyse's vision will be perfect.

I can't believe that a couple of months ago, when we first started seeing Dr. Curnyn in January 2010, Elyse left eye was at 20/80. That's pretty amazing. Her pupil doesn't wander or twitch like it used. Best part is that we never had to patch :) and its not a struggle to get Elyse's eyes checked. I told Elyse we were taking her to get her french fries checked in her eyes and she immediately knew who we were seeing. That's the little trick this doctor uses to get Elyse to cooperate. She tells Elyse she's looking in her eyes to see if she has french fries. Saturday Elyse had no french fries, instead she had cookies... Elyse loved it.

She pays attention :)

Elyse made me laugh yesterday. I’m constantly yelling at Alex and of course, when I’m mad, I yell ALEXANDER. Other than that, we all call him Alex. We’ve taught Elyse to call him ALEX.

Well yesterday I was calling him. He wasn’t listening (of course) so I called him again.. “Alex!” Elyse then turns around and say… “ALEXANDER!” I look at her and I said… “Como? (what?)” and she said… “Alexander, Mama?”

I thought it was funny and another reason to be careful what we say in front of her. :)

Doctor appointments today

Today was a busy day in Milwaukee.

Alex was seen by Dermatology and then Pulmonary.  Both appointments went well.  Elyse was a little jealous that the appointments weren't for her.  She's so used to it being about her.  She kept asking if it was Ezzy's turn.

Then both kids were seen by the ENT.

Elyse's sleep study results were good.  No obstructions.  He said he doesn't need to see Elyse, unless something comes up.  yay!  She even had a hearing test and her hearing is excellent.  She look so cute.  She was so proud of herself.  Me too :)  I wish I had a camera.

Alex's CT results weren't good.  Doctor said that Alex head CT showed an ear abnormality called Vestibular Aqueduct.  This condition can cause him to have permanent hearing loss.  It wasn't what we were expecting to hear.  I felt that the ENT did a horrible job explaining this condition.  First he made it sound like it was very serious.  He's telling us how head trauma can cause him to have or accelerate the hearing loss.  Yet he said to let him do boxing??  Doesn't make sense to me.

Alex is freaked out by this, as i am too.  I felt horrible.  I didn't know what to really tell him.  I've never heard of this and the doctor didn't help.  He ordered another hearing test and the audiologist gave us some information that another doctor had written. 

All we know, based on what the ENT told us... there is no explanation for this condition.  He could have total permanent hearing loss in both ears (currently, only left is being affected).  Head trauma can make it worse, but he said many football player have this condition and their hearing loss hasn't gotten worse.   This condition could be hereditary (right now, I'm thinking this is what my mother has).  He told Alex that if he notices any changes in his hearing, he has to let us know right away and we need to bring him back. 

I just emailed his pediatrician.  I'm hoping that she can do a better job talking to Alex about this condition.  I just started reading on it and so far, i'm still no getting it.  :)  Maybe i'm too tired.  I did read that contact sports should be avoided.  I don't think Alex no longer wants to do boxing.  I don't blame him. 

The only suggestion the ENT had, was placing a ear tube in the left ear.  Alex agreed. 

I am very disappointed with the ENT.   I'm going to wait to see what his pediatrician says, but I'm thinking of taking Alex back to his old ENT for second opinion.  I'm sure they will explain it better and not freak out my poor kid.


PS.
oh yea... :)  I'll to be 20 weeks (5 months) pregnant on Thursday.  That's going well.   This Friday, I'll be having a special ultrasound to check the baby's heart.  Same kind Elyse gets.  I'm not concern about it.  Then next week, I'll have my 20 week level 2 ultrasound.  =) Baby is kicking alot now days.  Lalo finally got to feel him last night.  AND we are still debating the name.  Lalo is still insisting that his middle name be Tiberius.  NOT HAPPENING.

In Milwaukee...

Alex had a lung function test on Friday and a head CT Scan Saturday morning. 

At the Ronald McDonald House.  The look on her face was priceless when I took her into the playroom. 

Getting setup for the sleep study.  She wasn't happy.  It was an awful night for both of us.  I pray that we never have to do it again.  It was so uncomfortable!

it was a struggle to put it all on.

Me, trying to calm her down a little

They used some kind of awful, strong smelling hair glue to keep that stuff on.

She looks all beat up.  Her left eye lid quickly swelled up.  They didn't hurt her or anything.  That's the lid with the hemangioma and lazy eye.  It's very sensitive. 

We will return to Milwaukee in April.  The results for both Alex and Elyse will be ready.  I'm pretty sure if things look bad, they'll call us in sooner.  Keeping our fingers cross for good results.

Alex got a CT scan of his head to see why he's having some hearing loss in his left ear.
He got the lung function test because he complains that his chest feels tight when he exercises.

Elyse got the sleep study because the ENT saw her tonsils and Adenoids enlarged.  He's concern that's she's having sleep apnea that could be very bad because of her cardiac history.  We never noticed any snoring until he asked.  We never heard it through the baby monitor, but one day I stayed in her room and I did hear her snore, it's not loud though.

“Focusing on Angles” Photo Challenge!

 

I love this picture and I thought it would be great for this weeks photo challenge at I heart faces .

This is beautiful baby Hailey, one of Elyse's PHACE's friends.  I took this pictures in one of our get togethers when she was about to turn one (I think).   She always had that serious look.  :)

Don't forget to head on over to www.iheartfaces.com to check out all of the entries this week!

Update on Ezzy's eyes!

Woo hoo! Elyse's vision in her left eye is improving!!!

We have been dilating her right pupil (good eye) since December for lazy eye. On Saturday we took her to see her opthamologist and we are soo excited that the once a week treatment is working! No glasses!!!

When the nurse first checked Elyse, she didn't want to cooperate. I was beginning to worry that her vision was getting worse, but then Dr. Curnyn came in and with some struggle, she was able to get Elyse to read the pictures with the right eye patched. Elyse allowed the doctor to examine her eyes up close without fighting me.

Dr Curnyn was just as excited as we were when Elyse started reading all the pictures. I asked her though, why Elyse continues to fight us when we try getting her to read the pictures with her right eye covered and she said because Elyse knows that its her weak eye. She gave us some patches to "practice" at home.

Dr Curnyn wants us to continue with the treatment for 2 more months. She is very hopeful that when we return, Elyses vision will be 20/20 and we can discontinue the treatment!! :)

I am soo happy we switched opthamologist. She is amazing and the way she gets Elyse to cooperate, leaves me speechless. I totally recommend her!!!!


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BABY!!!

today i had my genetics screening appointment that included a ultrasound.  they asked if i wanted to participate in a fetus research study.  i said ok.  it just involved more ultrasound pictures.

well i wasn't expecting to find out the baby sex today because i'm only 13 weeks pregnant, so i didn't bother asking.... but when the tech asked me if i wanted to know i was pretty shocked that they could tell.

she said that normally it's too early and they never could, but this baby was in perfect position.  legs wide open :)

we are having a boy!

and to think we though this year would be easy...

Yesterday we took both kids to Milwaukee.  I was able to get them both seen by the same doctors... ENT and Pulmonary.

Day started with alex getting a chest xray, then a lung function test.  He had been complaining of chest/breathing problems when he exercises.

Then we ran to ENT where Lalo was with Elyse waiting to be seen.  This was a new appointment for Elyse too.  First time seeing ENT in Milwaukee.  We weren't happy with our Chicago one.  Anyways.  Went over both kids history.  It's always fun trying to go over Elyse's.  Elyse was there just to followup on her conditions.  Alex was being seen for the hearing loss he felt in his left ear.  ENT had his ears cleaned and then sent him over for a hearing test.

Meanwhile, with Elyse.. he did a quick scope of her nose and throat.  She wasn't very happy.  Her vocal cords are still paralyzed.  Right one is completely paralyzed and the left one moves very minimal.   He also noted that her tonsils are enlarged and wants a sleep study.  He is concern because this could add strain to her heart if shes having trouble sleeping at night.  He feels that the tonsil need to come out.  I guess we'll wait to see how the sleep study goes because i've never heard her snore.  That would of been a symptom of them giving her problems.  but that's why we are doing the study, see if anything else is going on.  He said that if the tonsils do come out, then he can scope her airway and even do a test on her vocal cords to see how much they are really working.  OH and her ear tubes.  One seems to be coming out and another is either out or has fallen in.  That will be another thing he would like to look at.  The idea of having her tonsils out really has me nervous.  That's why i do want to make sure she needs them out.  Alex had his out, but they were laser.  I forgot to ask the ENT how he cuts them.

After Elyse's appointment, I took her to see the Pulmonary doctor.  Lalo stayed behind while Alex finished his hearing test.  We were on a very tight schedule.

Pulmonary said Elyse's lungs sounded clear.  We talked about her latest cold.  How its been difficult for her to get rid of congestion in her chest.  Two weeks ago, it got so bad that I called the clinic to see what we could do because we were already using the nebulizer 3-4 times a day and it wasn't doing much.  The clinic prescribed a three day course of steroids which on the first night, helped her sleep.  so after hearing this, Pulmonary decided to put Elyse on a steroid inhaler for the rest of the winter.  I mention our ENT appointment and she would also like to scope Elyse if she gets her tonsils removed.

In the meantime, the ENT was meeting with Lalo regarding Alex hearing problem.  He said that Alex did have minimal hearing loss in his left ear and so now Alex needs a CT scan to see why.

I was going over Alex's medical history with Pulmonary when he and Lalo arrived.  She asked him more questions and said that his lung function test was normal BUT he wasn't under any kind of stress.  Alex mostly complains after he's been running.  She told us she would like him to use an inhaler prior to going to gym class.  We followup in 2 months. If that doesn't work, he will then do a fitness test where they will measure his breathing.

It was a very long day.  We were very happy to leave.  We were starving and hadn't eaten anything since 8 AM.  There just wasn't any time to eat anything in between the appointments.

:) oh and on our way home... we got a flat tire!  it took what seemed forever to get home.  Lalo had to use a spare, so he couldn't go faster than 50.

Alex during his lung function test.  Looks like fun.  =D

two appointments

Saturday elyse had her eyes checked.  Left eye (lazy eye) looks straighter, but her brain isn't making the connection.  When they checked her left eye vision, she couldn't see well.  She fought us and wouldn't try to look through her left eye with the right eye covered.  We tried it several times, i covered her right eye with my hand, we tried patching it and we tried using special glasses.  nothing worked.  The opthamologist said Elyse wasn't seeing (i forgot the numbers).  Dr got a good look into her left eye and nothing has changed.  plan is to continue with the current treatment for 6 months.  Every week, i put an ointment in her right eye that will dilate her pupil for the entire week.  that forces elyse to use her left eye more and works better than patching.    Dr said that she is giving the treatment six months to work.  if it doesn't, well then move on to glasses and she may even order an MRI (if necessary) to get a closer look at Elyse's optic nerve.  Right now, we're keeping our fingers cross that the treatment will work.  We follow up in 3 months.

Monday was elyse's annual cardiology followup including ECHO.  Everything is good! EKG keeps getting better each year and blood pressure was normal.  We followup in a year.  He will order a heart MRI in 2 years, when she's 5 years old to get a more detailed view, but right now it's not necessary.