Elyse

So cute!

2011-08-23T22:52:00.001-05:00

Elyse had a good first day of school. She told me that she ate all her food, took a nap, read a story and played. :) Sound like fun to me too!

First day of school!

2011-08-22T12:15:00.000-05:00

Elyse -

2011-08-10T12:32:00.000-05:00

Elyse had an emergency MRI/MRA of her head, neck and heart (just the aorta) Friday last week. The scan was originally scheduled for Aug 17 as part of her follow up. Some stuff came up and it was decided that it was best we get them done ASAP. Yesterday right as i was getting to leave work, one of her doctors in Milwaukee called me and explained to me what was seen on the scans and what was discussed during their Vascular meeting...

Eyes - The report says that her right optic nerve is small. It's nothing new. It was seen in prior scans. On Friday, they mention it was called... Left optic nerve atrophy (Optic nerve atrophy causes vision to dim and reduces the field of vision. The ability to see fine detail will also be lost. Colors will seem faded. The pupil reaction to light will diminish and may eventually be lost). Elyse's eye doctor was called and she wants us to continue doing what we've been doing. She's supposed to call me something time this week, to discuss her optic nerve. Yes. I'm wondering what's going to happen to her vision, if she has Optic nerve atrophy. This is the first time i actually looked it up.

Her ARCH (heart) - On friday they mentioned Possible subclavian steel syndrome. Hm. I won't go into details, because i don't know how to explain it. The team has faxed Elyse's cardiologist the report. They want an ECHO (a ultrasound of her heart) done. As of right now, there is no restrictions on their part when it comes to cardiac.

HEAD - There was a change here. They saw an increased narrowing of the right internal carotid artery (major arteries of the head and neck that supply blood to the brain). We knew it was already narrow, but now its even more. They are concern. They want us to start giving her Aspirin everyday to help prevent a stroke.

They also did another type of study called MR perfusion. She said it measure the timing of the blood flow - to reach the brain. And because of this narrow carotid artery, the blood flowing to the right side of the brain, is much slower than the left side. The good thing is that the blood is flowing. It would be bad if nothing was. That's why they decided that they are going to rescan her in 6 months to make sure nothing else changes. They also want us to start seeing the neurologist again.

After she explained the carotid artery changes.. i asked, What does this all mean. meaning.. now what? What will happen to Elyse. She couldn't give me an answer. unfortunately, they don't know. She said, elyse might live a normal uneventful life.. or it can definitely put her at a even higher risk for stroke. We just don't know. That's why they are doing many studies with children with PHACE Syndrome.

I admit. It's scary. Very scary. I knew they were concern when they finally decided it was time for her to be on aspirin. In the years prior, she was ok. There hadn't been any changes until now. I'm very grateful that she has this team of doctors. I have confidence in them. I know my little girl is in good hands.

Thank you God! Ayden Pulmonist emailed me good news.

2011-07-14T08:57:00.000-05:00

Blood results are in: NO Cystic Fibrosis!!!!

I will copy what she wrote instead of me trying to summarize it…

His complete blood count showed a normal white blood cell count and no anemia. His immunoglobulins (antibodies) are also within normal limits. One type of immunoglobulin (IgG) was high, but when we worry about an immunodeficiency, a higher number is more reassuring. Sometimes the IgG is high during active inflammation/infection, and he’s always sick. His IgE was low, and that’s not a bad thing – IgE is usually high in allergy and asthma. So that’s the one immunoglobulin that we don’t mind being low. The others were in the normal ranges.

Ayden's CF DNA testing was negative. I spoke with our CF center director and she feels that with a negative sweat chloride test and negative CF DNA testing, we can feel comfortable that he does not have CF. There have been some rare patients who have grown Pseudomonas and have none of the mentioned medical problems (CF, PCD, immunodeficiency, lung disease). We just treat the Pseudomonas. I will continue to treat his symptoms and the bacteria from his bronchoalveolar lavage.

I feel confident that he does not have CF. His screening immunoglobulins look good. There are many other tests we could do, but I would like to see if he gets better before running up your medical bill.

Now we have an ENT for Aug 19. We still need to find out why his sleep study showed sleep apnea. His adnoids and tonsils are normal size AND doesn't snore. I read this is called Central Sleep Apnea.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0004404/

Always something!

2011-07-08T01:19:00.003-05:00

Elyse had her 6 month followup with her eye doctor. Everything had been going great. Since we started seeing this doctor, Elyse's vision had improved. NOW all of a sudden, her vision changed. In six months, the vision in her right eye has gotten very bad. So bad, that she couldn't distinguish the picture at all. The doctor is very concern. Her first thought was that it was neurological, but then she ruled that out when she tested her vision using colors. She said that if it was neurological, Elyse wouldn't have been able to see the colors. Next step will be eye patching the left eye everyday for one hour AND dilate her left pupil once a week. We will do this for 6 weeks. If there are no improvements, then she will prescribe glasses and she is letting Milwaukee know her concerns too.

Elyse is also due for a head & chest MRI. We are waiting for it to be scheduled. Her cardiologist is letting us get the heart MRI in Milwaukee along with the head. For three years, he kept saying he was going to order the heart MRI. So yes. i'm anxious to see the results. Praying that everything is growing properly AND we are praying for no changes in her head too.

NOW... AYDEN!!!!

Baby Ayden is now 10 months old. Unfortunately he has been sick a lot. Milk protein allergy, reflux, RSV, chronic coughing and wheezing... BUT now we are waiting for him to get diagnosed with Cystic Fibrosis. :( Everything is pointing to that direction.   He's had the sweat test, sleep studies, bronchoscopy and chest CT. He passed the newborn screening for it and the sweat test BUT we are learning that Hispanics carry different genes that mutate. On Wednesday, his pulmo doctor ordered blood work to check his DNA and his immune. When he did the scope back in May, one of the cultures grew a bug called Pseudomonas aeruginosa (which is a very common bacteria people with Cystic Fibrosis get). As of right now, she's treating him for that. She prescribed him a strong and expensive antibiotic in a neutralizer form that has to be given 2 twice a day, for 30 days. We also have to do CPT chest physiotherapy (basically we have to hit his chest above his lungs to help him breakup the mucus). I didn't realize how exhausting that was going to be. it's 30 min the morning and 30 min before bed. it's tiring on us because we have to keep hitting certain areas for so many minutes and switch him position (3 total - 10 min each).

His doctor said that it's still possible that he may not have it. We are keeping our fingers cross that he doesn't. We're hoping to get the blood results in two weeks.   If he does have it, then she will have us see the Cystic Fibrosis team in Milwaukee.

We'll see. so far, i haven't freak out yet. :) After everything we dealt with Elyse, I feel i'm handling this ok. I haven't gone all crazy and research anything yet. I'm just waiting.

So keep my little ones in your prayers!

:) Ayden was a little distracted

Facebook users: Help me win photo contest :)

2011-05-20T13:14:00.001-05:00

In case you haven't seen my Facebook posts :)

I'm trying to win a photo contest, SO I need your votes.

First you have to "LIKE" their page: Bella Life Photography

Then click on my picture (or click HERE) and vote (LIKE):

ayden t. camacho

2010-10-25T01:03:00.003-05:00

Tiny Trio Birth Announcement

Customize your own baby announcement at Shutterfly.

View the entire collection of cards.

preparing the soon to be big sister

2010-08-09T13:16:00.000-05:00

baby & me - followup

2010-08-03T13:13:00.000-05:00

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... :)

2010-07-23T17:46:00.000-05:00

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

2010-06-23T23:22:00.000-05:00

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

2010-06-07T16:22:00.000-05:00

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 :)

2010-05-05T09:49:00.000-05:00

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

2010-04-19T22:52:00.000-05:00

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...

2010-03-29T00:23:00.001-05:00

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!

2010-03-22T14:58:00.000-05:00

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!

2010-03-22T08:36:00.003-05:00

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!!!

2010-03-05T16:15:00.000-06:00

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...

2010-02-16T22:26:00.004-06:00

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

2010-01-20T22:56:00.000-06:00

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.

2009

2009-12-31T13:46:00.001-06:00

I was just thinking...

We had a good year. Elyse didn't get sick. Didn't require any hospitalizations. No longer requires nursing. No more monitors or scary oxygen tanks at home. She started Preschool and doing excellent. NO LONGER has a feeding tube (yay!!!)

Best of all... her MRI and CT have been stable and won't require any until she turns 5 years old!!!!!

2009 has been good. Now I’m a little teary when I think back to 2006-2007. That was such a difficult and scary time for all of us and yet looking at her now… I can’t even describe it. :) so i'll just stop there before I start crying.

Take care everyone...

Have a safe and happy New Years!

Happy birthday titi Caya!

2009-12-16T09:34:00.000-06:00

Superstar

2009-12-14T08:39:00.000-06:00

That's how Elyse looked on her way to get picked up by the school bus this morning. :)

We started the eye treatment. Her right pupil (good eye) is now dilated. I was able to put the ointment in her eye while she slept by putting it on my finger and rubbing it into the corner of her eye. I had to do it quick before she woke up. Saturday morning her pupil was enlarged. I had forgotten and we had a early appt. And it was very bright outside. so now I have to remind myself to buy and carry extra sunglasses for her. Her poor eyes were having such a hard time. She didn't complain, but she couldn't keep the left eye open and the right eye was tearing.

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Happy Birthday to Natalie!

2009-12-10T14:42:00.000-06:00

Nany, as the kids call her... is 5 years old today!!!

too cold for elyse?

2009-12-08T21:54:00.000-06:00

Coming home from the babysitters wasn't fun (its a 6-7 min walk - at elyse's speed). it's snowing outside and elyse doesn't like it. notice the pictures... her arms. she's afraid to walk by herself. I'm pretty sure, this would of been something her early intervention Occupational Therapist would have loved to work on. The entire way home she kept saying... "no snow mommy... i don't want it". =( sad isn't it. most kid get excited, but not her. this is her first year really being out there.

OK but then once we arrived home, after taking off her coat i see her face and saw how purple her skin around her mouth was. scary! these pictures were taken a little after, so she's not as purple as she was when we got home. but i think you can still see. i'm thinking that she's going to have to wear her snow suit tomorrow. Right now, I don't think it's very cold. it's in the 20-30. Can you imagine how she's going to look & feel when the temp starts to really get low... in the 10's and below!!!!

There is no explanation as to why she gets like this. Cardiology said it's not related to her heart. Everyone else said they don't know. Couple of our PHACE kids have the exact same problem.

New Ophthalmologist!

2009-12-08T13:32:00.001-06:00

Elyse had another Ophthalmology appointment. We were going to take her to someone in Milwaukee, but that person recommended we stay closer to home and she recommended a few around our area. We chose someone from her list in Arlington Heights, IL (much closer than Milwaukee). When I mention the name to our pediatrician, she immediately recognized it. Her niece sees her. She explained how her sister loves this Ophthalmologist and how great she was. With that said, we went ahead and tried scheduling. Of course, this Ophthalmologist was booked until March. Luckily for us, the Ophthalmologist in Milwaukee contacted Dr. C (our new Ophthalmologist in Arlington Heights) and she immediately emailed and had me talk to her assistant to get us in sooner. =)

The appointment was long, but worth it. First of all, Elyse did amazing well. Almost no tears! She resisted a little, but Dr. C knew how to get her attention and Elyse cooperated…. Except for the part when they have you look into that machine that measure the eye shape or takes a picture… can’t remember what it’s called. That one Elyse wouldn’t sit still.

Dr. C had a chance to read most of Elyse’s medical stuff from the hospital that was related to her eyes. She explained everything to me.. what she did and what she saw. Something our last Ophthalmologist failed to do without us asking him questions.

She saw everything we have been noticing. The weak left eye, the droopy eye lid and the blinking/squinting.

She agreed with the last ophthalmologist. -
Elyse does have astigmatism in both eyes, but it’s equal. Meaning that she doesn’t need glasses. Glasses are only needed when one eye is worse than the other.

She saw the white ring around the left eye optic nerve. She explained it to me, of course I can’t explain it back. =) but overall, it isn’t bad. It was something that she could have been born with.

Elyse wandering, turning left eye. She explained how the eye also jump up and down too. Something we hadn’t noticed. We only saw it move to the sides. She said it wasn’t very bad. With the treatment, she felt it can be corrected in less than 12 weeks.

Before I even asked about the patching, she started explained how the old treatment was patching. How it required us to patch her good eye every day for 4 hrs, but how the child fought it, especially starting it at Elyse’s age. She mention a new treatment that was recently studied that is supposed to be better than patching. Instead of eye patching, we will using atropine ointment once a week, to dilate her right pupil. This will force her to use her left eye. Dr C also gave me a child’s home vision test (sheet of paper with images in different sizes) to use as therapy because the vision in her left eye is 20/80. She recommends using this as much as possible. She also encourages us to have Elyse or us cover her right eye… hoping it’ll make our clinics visits a little easy, so she doesn’t freak out when we try to cover her eye.

I was very pleased with Dr. C. She seems very friendly and wants to help. I saw how much her patients like her and respect her. Now I don’t have to worry so much about Elyse’s eyes. This Friday we will be starting the ointment. We follow up in 6 weeks.

CHEESE!

2009-11-27T13:10:00.000-06:00

Elyse's first school picture!

eyes

2009-11-18T23:35:00.001-06:00

Yesterday we took Elyse for her eye check up. We were 4 months over due. The appointment didn't go well. Elyse freaked out and wouldn't let the ophthalmologist examine her eyes. He had to force her eyes open. She was not happy and neither were we.

He thinks she may have some trouble seeing through her left eye because during one of the exams, when i was asked to cover the left eye, she was able to tell us what the pictures were on the wall. Yet every time I tried the covering the right eye, she cried and wouldn't tell me what the picture was. In order to know whether her eye is lazy, he has instructed us to patch her right eye for 2 hrs. if we notice that she's having a hard time seeing, then we need to continue patching her right eye every day for 2 hrs for 4 months. If she does have lazy eye and the patching doesn't work, then he wants to do surgery to correct her eye. In the past, he said there was no concern, but we all saw how bad her eye was getting. Right now, her left eye is very sensitive to the wind and bright lights. A few weeks ago, we started noticing that she blinks alot.

We have asked her doctors in Milwaukee to refer us to an Ophthalmologist. Today was our first day with the patch and it was hard. We gave up after an hour and 45 minutes. I really couldn't tell how she was seeing. Tomorrow we will try again. =(

Doing her nebulizer treatment -

Trying to take over Boo Boo's new bed

Boo Boo's new bed

2009-11-11T08:43:00.000-06:00

I think we need to buy one for Elyse. Boo Boo isn't happy having to share it with Elyse.

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Halloween

2009-11-02T01:18:00.001-06:00

School
There was no party. Parents were allowed to come in for the first 20 min to take pictures. Elyse wasn't comfortable though. The teachers had a hard time getting her together with the rest of the class. She cried when she saw us leaving. =(

Trick or Treat with cousin Natalie & Ethan
This was her warm costume. She looks cute doesn't she. =) She loved asking for candy. She wasn't shy. She growled when they asked her too. She even started asking the people for water when she got thirsty.

Alex's Blood Pressure update

2009-10-30T16:32:00.000-05:00

yay!

Cardiologist called me this morning. He reviewed Alex's results of the Blood Pressure monitor Alex wore for 24 hrs and he said everything looks fine. We do not need to worry.

His average BP was 116/63.
The highest was 139/78
The lowest was 88/45

Normal BP one should have is 120/80 so for him to be 116/63 is very good. The monitor he wore, took his BP every 15-30 mins for 24 hrs.

Cardiologist said that I do not need to bring him in until next year.

So Alex does have White Coat Hypertension. :)

The H1N1 vaccines

2009-10-22T12:49:00.000-05:00

Yesterday our pediatricians office received a small shipment of H1N1 shots. A nurse called me this morning to schedule Elyse. I was able to schedule both Alex and Elyse for tonight. Alex is the one to always get colds, he's already been sick twice since school started. Elyse is getting the shot and Alex might be get the mist, but they are going to check first if maybe he needs the shot instead. Both seasonal & H1N1 mist contains the live virus which can cause the Flu like symptoms (but not always). Both Elyse and Alex had the seasonal flu mist in September and neither had reactions.

It was a tough choice whether to vaccine or not. There is so much information going on. I'm hoping and praying that I'm making the right choice FOR them. I've read both sides, but I have to do what’s best for Elyse. Most of the children with medical issues (like Elyse) are the ones ending up in the ICU. Alex has a better chance of fighting it off.

I also got to speak to the kids cardiologist yesterday. I wanted to make sure I didn't have to bring in Alex sooner. He said he will have the office mail us a blood pressure cuff (which I believe) Alex will wear for 24 hours that will record his readings. It will take his BP several times a day. This way, he'll be more relax and get a more accurate reading. Afterwards, I'll mail the cuff to the cardiologist office and we'll have the results in a couple of weeks before his appointment in January. I feel so much better. I really didn't want to wait until January because what if it is high. Better safe than sorry.

Alex

2009-10-20T23:23:00.000-05:00

Today Alex had his 13/14 year check up (he turns 14 in January). He is in the 90 (height) 95 (weight) percentile. The pediatrician said he is as tall as a 16 year old (sigh!). I did walk out of the room so he could examine him privately. When I was called back, the doctor explained to me that his BP (blood pressure) is a little elevated. It was 130/90 - (should be below 120/80).

Some of you might recall, last year I had to schedule him an appointment with Elyse's cardiologist for a EKG & echocardiogram. They blamed the ADHD medication and anxiety for the high BP. Currently he isn't on any medication except allergy shots (which i forgot to mention - Oops!). He hasn't been on the ADHD stuff since last year. The pediatrician isn't too concern though. He also thinks that Alex might be getting nervous, raising his BP based on his heart rate. He suggested we make the followup appointment with cardiology before he did any blood testing or ultrasound and let cardiology decide what the next step should be. Good thing I've already schedule both Alex & Elyse for January (sigh!), but I may end up rescheduling it soon now that we know his BP is still elevated.

Seriously, taking Elyse is nerve wrecking, having to take both will be worse. Hopefully it's just anxiety like the doctor thinks. My mother has a BP cuff, so the pediatrician suggested we taken his BP a few times a day to see how the numbers look prior to the cardiologist appointment. That way we'll know for sure if it is anxiety or something else.

MRI results

2009-10-13T10:32:00.000-05:00

Elyse's head MRI was reviewed yesterday by her doctor, neurologist and neuroradiologist. They compared it to the MRI done 6 months ago and...

There was no change! Everything is stable. =)

miscellaneous stuff

2009-10-09T13:47:00.001-05:00

Elyse & Leanis

This is Leanis. Leanis lives across the street from us. Elyse loves to play with her. Well it's been a pain coming home from the babysitters house. If she sees Leanis, Elyse will try to run across the street. I have to take her to say Hi. They don't talk. They just smile at each other, hold hands and sing, "ring around the rosey". Then I have to carry her back home because of course, she's screaming and kicking.

Watching Yo Gabba Gabba

Finally, I've found something that will keep her calm! Not even Elmo or Dora keeps her this interested. Which I know is good, but sometimes I do need her occupied while I cook.

Baseball

Here she's playing baseball. Papi is proud.

Speech update

We are amazed at Elyse's vocabulary. She's still learning, but it's cute hearing her express herself.

Wednesday, we went to Target. She's trying to tell me something, Lalo replied and she immediately told him... "I talking to Mami"

:) You know I'm loving that one.

Family new

Elyse has a new cousin. Baby Jacob was born last week. We visited Lalo's sister on Sunday and Elyse was so happy. She got to carry baby Jacob. She was so proud. I have many pictures, but I haven't had time to edit them.

Good Morning Boogie

2009-09-24T23:21:00.004-05:00

She had us guessing again. She's been singing & dancing something she learned in school, so Lalo went online and figured it out (we think).

Good Morning Boogie

Hello Neighbor, what do you say?
(Children bow to each other)
It's going to be a happy day.
(Children clap hands together)
So greet your neighbor,
(Children give each other high fives)
And boogie on down.
(Children wiggle their hips)
Give 'em a bump,
(Children bump their hips together)
and turn around.
(Children turn around)

The bus

2009-09-15T10:07:00.001-05:00

Second week of school and Elyse is doing great. Still no tears. Yay, my little mamas! Yesterday was her first day riding the bus to school (they bring her home too). We had some issues with them not having a car seat installed (because she is so little and it’s written up in her IEP) but that was taken care of. Today the bus had the seat installed. Very cute, she saw the bus from our window and yelled, “Mommy! The bus! The bus!” it was a couple minutes early. Yesterday it was 5-7 minutes late, so I really wasn’t expecting it. Thank God she was ready. Even sitting on the car seat, we could barely see her forehead from the bus window. Sorry no pictures. =(

In two weeks, we will be taking her to Milwaukee for another head MRI/MRA. This will be her first scan in Milwaukee. The doctors wanted a scan with their settings. I guess each hospital does it differently and in Milwaukee, they have a specific protocol for the PHACE children, which I like. She will be sedated, which will also be a first time. They will use general Anesthesia if they notice any signs of trouble with her breathing. After the scan, we will meet with her dermatologist who is now her doctor that we will be seeing for the PHACE. I don’t know when the MRI will be reviewed, but neurology will also review it and then decide if Elyse should be on aspirin therapy because of her abnormal brain vessels. so we'll see what happens.

Vote PHACE Syndrome to be featured on The Doctor's TV Show

2009-09-11T12:32:00.002-05:00

PLEASE VOTE!

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1st day of pre-k!

2009-09-08T20:18:00.003-05:00

Before I begin to update... Please pray for 6 year old Molly who lives in the UK. Molly, like Elyse has PHACE Syndrome. Yesterday her mother informed all of us (in the PHACE Community) that Molly suffered a major stroke and has a life threatening aneurysm. We are all very sad and frighten. Please pray for Molly and her family.

Now for Elyse's update...

Today was Elyse's first day of prek. As expected, she did great. No tears. As soon as we walked into the classroom, she took off her bag and left us. Parents had a meeting in another room and the kids stayed with the assistants for 45 minutes. When we came to get her, she did not want to leave. They had taken the kids to the playground, so i had to go in and drag her out. =) she's looking forward to it tomorrow.

Leaving school. =) Look at that face. She was not happy.

Nap time! Very exhausted.

OUCH!

2009-08-07T08:15:00.000-05:00

poor Elyse... still senstive to that damn tape. Her stoma seems to be healing, but i'm supposed to keep it covered with gauze and tape. She's really breaking out.

Tube Free!!!

2009-08-04T23:18:00.000-05:00

i'm so excited. Elyse did us a huge favor. She managed to yank out her feeding button. Don't know how it really happen, but it's out. I called GI in Milwaukee and they said i didn't have to worry about forcing it in since it was the plan anyways... BUT only if I felt she no longer needed it.

well heck, I didn't even try. she's eating and drinking good. We have no problem getting her to drink the pediasure. She loves that nasty stuff. it's the first thing i have to give her when she wakes up. she even wants more after she's had her second bottle (we don't give her more though).

We are still taking her on the 18th since we still have the Pulmonary appointment scheduled.

Also, we have switched some of the other services to Milwaukee. I seriously can't remember if i have blogged this. We are now seeing Dermatology (will take over our Chicago hematologist) and Neurology in Milwaukee. We love our Chicago doctors (Hematology & Neurology) but Milwaukee has a Vascular clinic, they are doing research and seeing more kids with PHACE. I felt that was the best place for Elyse.

Dr. D (dermatology) and Dr. S (neurology) seem very nice and I've heard great things about them. We had our first appointment two month ago and now we are in the process of scheduling a new MRI of her brain in Milwaukee. Dr. D has a protocol setting for MRI's for the kids with PHACE. They did review all of Elyse past MRI's from Chicago, but felt that the images were clear enough to answer some of my questions. We are hoping to get the MRI schedule on the 18 but, we'll see. Elyse needs to be under general anesthesia because of her history with reflux and aspiration.

Sneaky!

2009-07-30T10:16:00.000-05:00

Ahhh! She's finally mastered opening doors and the refrigerator.

I had to buy covers for the door knobs. She loves playing with sink. Water is everywhere or if she goes potty in the big toilet, she leaves a mess for me.

Then she opens the refrigerator and takes food out. She knows her daddy keeps his Reeses peanut butter cups in there. Funny how she takes one for herself and one for daddy, so he won't say anything to her. It works. Saw it happen yesterday. Now I need to buy a lock for the refrigerator too!

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Milwaukee - short update.

2009-07-28T15:06:00.000-05:00

Last week, we stayed overnight at Milwaukee, WI. No appointments. Just fun.

Thursday evening, we got together with other PHACE families, mostly families around the area. We enjoyed it. Friday we went to the Milwaukee zoo for a The Birthmarks and Vascular Anomalies Family Conference hosted by the Children's Hospital of Wisconsin Dermatology clinic. That was nice too. We came home that same evening.

I didn't take that many pictures. I was having too much fun holding one of the babies.

click on the link for the pictures. I'm too lazy to upload them here.

Milwaukee Pictures

AUGUST 18... WE HAVE A GI APPOINTMENT. KEEP YOUR FINGER CROSS THAT THE TUBE COMES OUT and we also have a Pulmonary appointment for the first time in Milwaukee too.

Potty news!

2009-07-21T14:32:00.000-05:00

Elyse has been accident free for two week!

I've been afraid to post about it, didn't want to jinx it. She has been going by herself and has managed to stay dry at night (well most nights). I have to make sure not to give her too much liquid at bedtime, which i normally don't and as soon as she wakes up, I run into her room and sit her on her potty.

I was afraid she would never get it. We've been working at it for a year. Her nurse Ida started her off last year around May. I'm really excited. I'm hoping that by the time school starts, she'll be a pro.

I have to give Ida a call and let her know of the exciting news. I know she will be so excited to hear about her "chicky".

Your support is urgently needed - Children's Memorial Hospital (Chicago, IL)

2009-07-15T14:37:00.002-05:00

Please sign this petition today in support of a heliport at the Ann & Robert H. Lurie Children's Hospital of Chicago. Even if you sent a letter or signed a petition in the past, we ask you to take a minute to renew your support of the heliport. The heliport will help save lives and is an essential part of our ability to fulfill our mission of caring for the region’s children. Thank you.

Your support is urgently needed - Children's Memorial Hospital (Chicago, IL)

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Elyse's first time at Millenium Park

2009-06-26T23:25:00.002-05:00

BIRTHDAY PARTY

2009-06-25T10:51:00.000-05:00

La artista

2009-06-23T11:13:00.000-05:00

She's quiet, so I check on her and I find this...

That's craft glue from her birthday party.

Happy cake and...

2009-06-17T10:12:00.001-05:00

ELYSE WISHES TITI MIMI A HAPPY BIRTHDAY!!!

No video. Didn't have time to post it.

Happy Birthday "Ezy" Elyse!

2009-06-16T11:08:00.001-05:00

We told Elyse it was her birthday this morning and she was all cheesy. We sang "happy birthday" and of course she asked for the "happy cake". that's what she calls birthday cakes. cute, right?

I have no recent pictures... can you believe that. =) But i recorded her a little singing to herself "happy birthday". i'll post that tonight.

Now that she's three (omg she's three!!!). She is done with Early Intervention. No more therapies except for her Speech for language & feeding. She agreed to continue working with Elyse twice a week billing my insurance. How cool is that. She'll continue coming to the babysitters house. She even said that she will work with Elyse when she starts school.

Elyse will also continue to go to her speech/OT playgroup on Wednesdays. Early Intervention used to pay for it, but now bill my insurance. She really loves it there. She even has a special friend, Danny. It's all about Danny. I got to meet Danny two weeks ago and the boy doesn't even acknowledge Elyse, but Elyse loves her Danny. She makes sure Danny is well taken care of. I was told that a new boy started playgroup and she introduced both boys.

Oh and next week, Elyse will be doing weekly Spanish class for an hour for 6 six weeks along with my niece. That should be fun. Elyse is using more Spanish since her babysitter only speaks Spanish. I crack up because she repeats phrases the baby sitter uses, like "HOLA MI AMOR"... "hello my love", The babysitter is also Puerto Rican, so some of their words are different from ours (we're Mexican in case you didn't know). so it's cute.

Friday, We had pizza for dinner. We decided to eat in our living room. Elyse was sitting at her chair and she saw me put a pillow behind my back. she then asked for her pillow, but i told her no because she needed to finish eating. After she was done eating, she started playing with a little monkey - stuff toy. she asked me "Mami, monkey eat?" i replied yes and she went, put monkey on her chair and strap him. Then i heard her say, "NO PILLOW, EAT" it was too funny. She was even using her finger. of course she knew i was looking at her, so she smiled. Brat.

Aren't they cute!

2009-06-08T23:12:00.006-05:00

These were taken in June 2007.
I'm glad they were still available for purchase.

The kids (mine & my sisters)
Alex - 11 yrs old
Elyse - 1 yr old
Natalie - 2.5 yrs old
Ethan - 1 yr old

fun times

2009-05-28T09:53:00.004-05:00

Last weekend Elyse was invited to her best friends birthday party. Gabriella is 3!!! Elyse had lots of fun. It was very cute and it gave me some nice ideas for Elyse's little upcoming party.

Cousin Ethan sleptover Friday & Saturday. That was a treat for Elyse. She loves her cousin Ethan.

They woke up at 6 AM Saturday!!!!

Upset with each other

pool time!

Ice cream, Boo Boo even enjoyed some.

at McD's!

The count down begins!

2009-05-14T13:49:00.001-05:00

My little mamas is going to be three!

Huge deal. She will be done with early intervention who she currently sees five times a week, including Saturdays.

She is all set to start prek this fall. :)

This summer, we are hoping to get the feeding tube out. Three weeks ago, her weight went down 25.7 lbs (result of losing her nurse), but today I got her weight and she is 27 lbs! I'm currently waiting for her dietitian from Milwaukee to call, so that I can update her and maybe schedule a visit in July.

She's very happy at her babysitters. I struggle to get her out. My legs are bruised from the kicking when I try to stand her up. You know, how they make them self fall and you can't get them stand, then they kick back!!! Yea. That's what she does.

Health wise -

I started giving her childrens claritin. I think she has allergies. Runny nose and coughing for three weeks. I have allergies and so does Alex. Her symptoms started the same time ours did plus she also has mild eczema and her scalp has gotten very flaky. I scheduled a allergy test appointment in june (that was their first available) where alex and I go. Childrens hospital didn't have anything till August. It will give me some time to see how she response to the Claritin plus she also has her 3yr checkup, so that'll be something to bring up.

We have a couple of appointments scheduled in June, including CT Scan of her chest and abdomen.

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:)

2009-05-08T11:57:00.000-05:00

This is how Elyse looked when I dropped her off at the babysitters house. She decided to change a few things. I did not put these on her.

Pink fluffy slipper (backwards) & the green hat that doesn't fit.

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What happen?!

2009-04-28T08:37:00.001-05:00

This is how I found Elyse this morning.

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Our weekened -

2009-04-27T09:39:00.000-05:00

Friday -
Nurse Ida came over to say goodbye & pick up some stuff. It had been two weeks since Elyse saw her (Ida was out taking care of her son who had surgery when I terminated the nursing). Elyse was very happy, we were waiting outside and when she got out of the car Elyse gave out her "I'm very excited" yell and almost ran into the street towards her.

Saturday -

Boring!!! It rain on and off all day. After Elyse's morning physical therapy & breakfast... Elyse and I took Boo boo on a walk around our street. When we got to the corner (where we turn to her babysitter) she cried because she wanted to go there. We came home and then we decided to go to the park with Lalo & Boo boo (Alex was with his dad). I wanted Elyse to get nice and tired for nap time =D.

Sunday - More rain!!!

yep, that was it. lots of rain

IEP meeting today

2009-04-22T22:46:00.001-05:00

Today Lalo and I had a meeting at our neighborhood public school for Elyse's IEP. Our social worker from Early intervention joined us. She was there for support. I think it went pretty good. Each therapist had evaluated Elyse and then gave their recommendation. Whether she needed additional services or not.

She will be placed in a blended classroom. Blended classroom mean "they are designed to meet the needs of 3 & 4 year old children with disabilities in the general education classroom with consistent support from an Early Childhood Education Teacher." There will be 20 children - 14 students from preschool and 6 with special needs. Two teachers - one special education, a regular teacher & one teacher assistant.

She will receive speech & occupational therapy and because of her medical history, they want a nurse to be available too. The nurse said that she will be check on everyday to make sure she is OK. That I wasn't expecting, but I'm glad she got. She will also get bus to and from school. A aid will be in the bus to help her get seated and because they think Elyse is small, they advice me to make sure CPS provides a car seat for her. Oh and because she isn't potty trained, they will help us with that too.

Now we wait for them to decide what school she will be placed at, so far we know of two schools in our area that provide this Blended classroom. They also said that sometimes they can change each year. Some are full too.

In order to prepare Elyse for school in the fall, our social worker through early intervention recommended that in the summer before school starts, to visit the school and take some pictures of the building, the classroom and the teacher. Use those picture and tell Elyse "this is where you will go.. this is going to be your teacher, classroom". I doubt Elyse will cry. She is too friendly, but we'll see.

Sleep, baby sleep... PLEASE!

2009-04-16T09:08:00.001-05:00

Elyse's nurse has been out this week. Her son had a heart attack two weeks ago and on Tuesday required bypass surgery.

We have been looking into day cares since we only have two weeks left of nursing. I visited the home-day care by our house and even arrange it so that Elyse could do a week trial this week.

I'm glad we did, because the babysitter was uncomfortable at first. I took Elyse over and she saw how normal looking she was and agreed to do the week trial. So far its been good. The lady said she is behaving, eating very well and even going potty.
Elyse seems very comfortable. A little too much, she warmed up to a little girl on the first day and she started doing her head patting thing. Elyse's OT had a session with both girls and will work on Elyse's play skills. Her OT told me I shouldn't worry. Its Elyse ways of showing her love. Elyse is very happy to be with the children. Its something she craved and you can see it.

After seeing how well Elyse has adjusted, lalo and I decided to terminate the nursing services. The babysitter said she was comfortable with Elyse.

Now if only Elyse would take her naps, everything would be perfect!!! When elyse doesn't nap, she doesn't sleep well at night and if Elyse can't sleep... Mommy can't sleep!!!! So sleep baby please!

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Elyse's new hair do

2009-04-11T18:36:00.001-05:00

I know, I know... Her long hair was pretty, but she ate it! Well she chewed it and it was driving me crazy. At least now it doesn't require a lot of maintenance.
Oh and it wasn't easy, she gave us a hard time. She cried, kicked... It wasn't a good day for a cut.

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GI appointment/ big news...

2009-04-02T19:16:00.000-05:00

Feeding tube is still there. Doctor said that she is still not ready for it to come out. Good news is that we follow up in 6 months. During that time, we are going to try not using it (even if she gets sick). If she continues to grow, then the tube can come out.

Other big news!
NON- GI related...

May 5, 2009 will be the last day we will have nursing. It is being terminated!

So tomorrow I will have to start making some calls and start arranging some days to go check out some daycares. I'm totally freaking out. I was expecting this to happen, but with a extra 60 day notice. Oh well.
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Good grades

2009-04-01T15:48:00.000-05:00

I got to pick up Alex's report card a little early (it's supposed to be pass out tomorrow), but since we're going to take Elyse to Milwaukee tomorrow his teacher gave it to me this morning.

It was all good news. He did excellent. No complains from his wonderful teacher. She told him that if he continues to work this hard and keep his grades up, he will have a good chance of going to a good High School. Ya! I still say, what a difference from last year. This kid went from D's to A's. He is very proud of himself and so am I.

Elyse News -
Tomorrow she has a GI appointment in Milwaukee, WI. We are going to discuss the possibility of taking out the feeding tube. We'll see. =) that's a hard one after seeing how convenient it is when she's sick.

I'm looking forward to a little shopping afterwards. OUTLET Malls Woo Whoo! =) My little mamas is in desperate need of pants. Those little legs are having stretching out.

tired & sick

2009-03-25T10:46:00.000-05:00

Last week Alex had the Flu. Friday Elyse started with fevers, then the coughing and sneezing started plus runny nose. appetite wasn't good either. she was drinking her pediasure, but Monday she didn't want anything, so we had to tube feed her. I finally made an appointment at the clinic because she wasn't letting us sleep. I'm glad i did. turns out she has another ear infection. one of her tubes is blocked and the other one seems to be out AGAIN. She back on antibiotics again. He wants us to follow-up with her ENT. Poor mamas.

Alex is doing better. I'm starting to get a cold and everyone in my mothers house (thanks to Alex) has flu like symptoms too. the doctor we saw yesterday said that the flu is hitting a lot of people this month.

other news -

Monday Elyse had her first IEP evaluation for speech. She did good even though she wasn't feeling to good. My little mamas was very proud of herself whenever she answered a question. so cute, she sign the word and then say it. The speech therapist said that she will qualify for Speech.

afterward Lalo & I got interviewed by the social worker & nurse. Today we were supposed to meet again. she was going to get evaluated by occupational therapist and lalo & I were going to meet with the psychiatrist. I rescheduled since Elyse is sick and they gave me such a short notice. now we wait again.

Cell phone pictures

2009-03-09T14:04:00.002-05:00

play group

HATS

PARK

FIRST happy meal & own meal at a restaurant

NAP

SNOW DAY

2009-02-21T15:58:00.009-06:00

MRI RESULTS

2009-02-20T20:41:00.000-06:00

Elyse's neurologist called me this morning. The report isn't available, but she spoke to radiology and there are no changes!!!

I will ask her pediatrician for a copy of the report, when she returns from vacation. I'm curious to see the measurements of her spine hemangiomas. Her neurologist couldn't give me the details without the official report.
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Home after MRI

2009-02-16T16:42:00.000-06:00

Elyse is home. MRI was 3 hours long. I was starting to get a little restless, but then the nurse came and said she was out.

Elyse had a bit of trouble staying awake. She wasn't interested in drinking or eating anything either, but they said it was ok to bring her home if we were comfortable. She took a few sips of milk in the car and ate some oatmeal at home.

Now she's running a low fever which they said could happen. I'm going to give her a few ounces of water through her tube to keep her hydrated.

Not sure when we get the results. Shouldn't be that long. Her neuro is usually quick.
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MRI this morning

2009-02-16T09:31:00.001-06:00

We are currently waiting in the hospital cafeteria while Elyse gets her annual MRI of her head & spine.

She went in at 8:30 AM and it will take any where from 1 hrs 45 min to 2 hrs. She is under general anesthesia, so recovery should be fast.
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bedtime

2009-02-12T23:12:00.003-06:00

I'm going to keep a photo bedtime diary of Elyse.

Every night I walk into her room and find things on her bed. I didn't get last night picture.

Tuesday, Feb. 10

Tonight, Feb 12.

Annual cardiology check-up

2009-02-10T10:36:00.005-06:00

Elyse had her annual check-up and she is doing great.

BP (blood pressure) is normal, her heart sounds good and EKG looks better than last year! He only said that when she's older, they'll want to do a MRI of heart to check her aorta.

Next week, MRI of her head and spine.

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Tired aren't we! I wonder why.

2009-02-09T15:21:00.002-06:00

No explanation needed =)

Exhausted!

2009-02-08T22:09:00.024-06:00

We had a little accident. Friday morning Elyse fell out of her crib. She didn't hurt herself. Lalo had to go and buy a crib tent ASAP. I had ordered one online on Monday, but because i was trying to save money, i had it shipped to the store and it was going to take 7-14 days to deliver. We had no choice, but to get the second one.

The tent he got didn't work out. He also purchased a toddler rail for cribs (not cheaper either), so we have that on right now. n bad. The first night she stayed in it. I guess she was exhausted. She did wake up and manage to go to our room with my camera ??? she must of seen it and decided to bring it to me. I didn't even notice the camera until the morning.Last night was worse. She would not stay in it. She kept getting up a million times. I was getting very frustrated and I really wanted to put the crib rail back on. I tried not talking to her and just taking to back to her bed. I was so tired that I ended up rocking her to sleep. Of course she was back in our room early in the morning.

Tonight was better. She got up a couple of times, but as some suggested... I closed her door and she couldn't up it. she cried a little and got back into bed. An hour late, she is asleep. YAY! I'm sure she'll be in our room this morning. I'm not going to kept her door lock. I have major organizing to do to her room before I do that. We still have medical equipment that i would want her to play with, in case she got bored.

Left pict. first night. Right pict... trying to be sneaky.

We also visited the zoo Saturday afternoon. My old H.S came over and picked Elyse and I up. Elyse didn't enjoy it much because she hadn't napped. Which is another thing we've been struggling with. She doesn't want to take naps!!!!

I'm hoping that this week she gets back on track.

Vicks VapoRub Misuse May Hurt Kids

2009-01-29T11:20:00.000-06:00

Link

I want Thomas...

2009-01-24T12:56:00.002-06:00

Click to view my 7 sec. video... =)

From I want..

I have to brag =)

2009-01-22T10:22:00.002-06:00

Good news!
Last night I got a email from Alex's homeroom teacher. It reads:

Mrs. Camacho,

I'm so thrilled to let you know how great Alex has done in my classes. Report cards will be given to the students on Friday, but I'm just so happy that I wanted to let you know his grades beforehand. Alex's hard work has paid off and he will be receiving an A in social studies, a B+ in reading, and an A- in language arts. I've spoken with Miss Hollis and she told me that he also did well in her classes. Alex seemed so pleased with his grades. He truly makes my job easy and that much more rewarding.

Can I just say how excited I am. Last year was very bad. That middle school, would not help. I had meetings, I emailed teacher, I left phone messages and I even had doctors letters asking for help. They would not do it.

This year, thank God he was accepted to a Charter School. First week he started to struggle, but I immediately contacted his teacher and she contacted the principal who then contacted the case manager who then contacted me. All within 4 hours! We set up a meeting. I got another doctor letter. The school gave him his 504 plan (which the other school never wanted to do, even after I requested it in writing).

AND NOW LOOK! =) We haven't had a single problem. Homework is being done. No missed projects. Teachers are aware of his ADD and help him stay on track.

Can I just say how bad I want to email his old teacher from last year and rub it in their faces. =D

preschool

2009-01-22T09:42:00.004-06:00

Yesterday was the first of many to come meetings in preparation for preschool. We met with our home school and a bunch of therapist. They're amazed to see how well Elyse looks after reading all her reports. I guess they were expecting to see a very fragile sick looking child.

They have 60 days to review her case, then schedule more meeting to do evaluations and interviews. They will then decide what services she will receive next year when she start preschool. If that school cannot provide the services she needs, they look for next school in our area that will. Transportation will be provided.

So far, just based on the fact that she still isn't potty trained (we are trying) our home school cannot take her.

If transportation is provided, then we can enroll her in daycare (preschool is only 2 hrs) and the bus will pick & drop her off at that location.

Now i was ok with this. This is what I have been talking to lalo about, but yesterday my mother had to tell me about the daycare worker that threw a 16 month old on the floor. Lalo had mention it to me before, but I didn't know the exact details. I looked it up and I'm heart broken and terrified.
http://abcnews.go.com/TheLaw/Health/story?id=6689027&page=1

So cold! So cold!

2009-01-16T09:28:00.000-06:00

Nothing else to day except how cold it is and I can't feel my toes =(

Ohh no...

2009-01-15T17:11:00.001-06:00

Elyse's left ear is also draining junk. Her nurse told me that it was bothering Elyse this afternoon. The nurse has been using hot towels and that seems to make her comfortable.

Elyse started her antibiotics (CEFDINIR)on Tuesday. I don't know if I should wait a bit longer and give Tylenol or take her in?

Tired!

2009-01-14T09:21:00.000-06:00

Ear infections are no fun. Elyse is fine during the day... she does rub her ear a lot and tells me "ear" because she wants me to put the ear drops (maybe it make her feel better?), we even figured out some new flavors she likes (sour cream) to add to her food... but night time! When the coughing doesn't wake her up, her ear does.

Last night I think it was the ear. We ended up having to give her the Tylenol around 1 AM. Then she calm down and I don't remember what time or why, I brought her to bed with us. I think she was crying..?!

This morning she was sound asleep between Lalo and me upside down. I cancelled her playgroup this morning. She needs her rest.

Ohhh well

2009-01-13T07:19:00.003-06:00

Last night, both Elyse and Alex had sick appointments.

Alex has a sinus infection and left ear infection. He can't hear from his left ear. They check it for movement and it's flat. The doctor that saw him is a little concern. He said if that ear continues to give problems, then we will have to revisit his ENT. Alex did have ear tubes back in 2003. He also had his adenoids taken out and his tonsils shrank.

Elyse has also been rubbing her right ear (the one with the new tube). I was a little concern over the weekend because i noticed junk draining out. They told me it was good that it was doing that. The tube is doing it's job and we have to continue with the ear drops they gave us after surgery. BUT she hasn't been eating or sleeping well. She still is very congested. Since Alex was going in, i figure better safe than sorry. Turns out she also has an infection in that right ear and the junk is puss draining. We also talked about the weight loss and this doctor said to use the tube again. We have it, use it. I said OK. =) Once Elyse starts feeling better, then we can go back to not using it. i guess i have to hide my little ticker over there on the right side.

OH i forgot to mention. A cute moment (at least for me it was)...

After checking out at the clinic.. Elyse kept saying "Elmo..Elmo" we sort of ignored her. we thought she had seen an elmo. As i was putting on her hat (still by the receptionist area)... she said it again.. "Elmo... Elmo" Then it clicked. She was asking for her ELMO stickers. =D I turn around to Lalo and I said, "do you know what she wants.." the receptionist heard me and heard Elyse and she said to the other girl... "oh... she wants her Elmo sticker"

Oh my little mamas... remembered that they have stickers and they normally give her one when I check out. this time they hadn't because she was with Lalo.

Alex is turning 13 tomorrow!!!

2009-01-11T13:03:00.006-06:00

Tomorrow is the little man birthday. Not so little anymore. Alex turns 13! Yikes.

He spent the weekend with his dad & his family. We'll have to do a late celebration next weekend.

My little mama's has a cold. Lots of coughing and congestion. I'm also a bit concern about her weight. Some of her therapist made comment how she's thinning out.. how they can feel her ribs... etc. To me it's concerning because she's not eating too well. We do struggle to get her to drink her 2 bottles of pediasure & 1 cup of water. I got her on the scale this morning and she's lost a pound.

I'm hoping this week will be better. Ida (day nurse) is returning. Elyse does much better with her. Last week with her out sick, Elyse was able to get away with a lot.

Oh yea. Vocabulary is increasing. =) All weekend she's been naming everyone in my parents house. She misses them. "Ethan, grandpa, pinky (dog), coco (dog), claudia). We were supposed to take her over, but the weather hasn't been good.

Friday morning I had a meeting with her Early Intervention team (birth-3 yr program). Overall they are very happy with her progress. She has little areas of delay. PT is still working on strength. climbing stairs, jumping. OT not much. SPEECH & Language is working on two words. SPEECH for eating... well what can I say. DEVELOPMENT she's good. she's working on instructions. her play skills are very good. DEVELOPMENT & OT recommended that I bring Ethan during her OT sessions. They are going to work on Elyse's play skills with other children. Elyse still loves to pin other kids down, so we want to work on that before she starts school in the fall.

Another thing we talked about was potty training. We were a little concern about her not holding it longer than 20 minutes. Their recommendations is to take her to see the specialist now that way we have an idea of whats going out instead of stressing about it.

Sure after I emailed Dr. Bergquist (pediatrician) Elyse kept dry all day yesterday and went potty every 3 hrs!!!! EVEN after drinking a cup of milk. YAY!

so maybe she's now getting it? i think it does have to do with the fact that we are constantly trying to push liquids.

today's small surgery

2009-01-05T12:43:00.001-06:00

The procedure went well. We left the hospital around 10:30 AM.

They drain her right ear and replaced the tube. At 9 AM I went to the recovery area and it was so funny. The pink stuff they gave her to relax was still in her system so she was wide awake but all drunk like. She was playing with gloves.

of course 30 minutes later she started to get cranky and her ear seemed to bother her, so i requested some tylenol.

She drank a full bottle of pediasure at the hospital and when we got home she ate her yogurt with cereal. Now she's snacking on chips (she saw the bag and couldn't resist).

I'm so excited that ENT doesn't have to see her for 6 months unless we need to sooner. Her pediatrician will check her ear in 4 weeks. Much easier this way.

Also a request, our day nurse Ida isn't well and is in the hospital. Please keep her in your prayers. She'll be out the rest of this week.

A few pictures of this morning before the procedure.

She slept!

2008-12-30T05:01:00.000-06:00

Ahhh... priceless

terrible nights!!!

2008-12-29T09:28:00.001-06:00

I want to kill my perfect child!

She cried all night! I have no idea why. She also cried the night before! I thought, hm... maybe she is over stimulated. She slept over grandma's house two nights in a row (her first sleep over, not counting the hospital stays). Maybe her schedule is off... last night i thought would be better. I even thought she was constipated, but that wasn't it.

Now i'm tired. Very tired and of course now she sleeps. Don't you hate that!

I'm late for work and I'm going to be feeling like crap.

I hope she's not hurting somewhere inside.

a few new toys

2008-12-29T00:03:00.001-06:00

Elyse is very happy with her new girl car and writing thing (forgot what it's called) even though as you can see in the middle picture... she found another use for it.

xmas with family

2008-12-25T23:24:00.002-06:00

GI update!!!

2008-12-19T06:02:00.000-06:00

Whoo woo!

No more prevacid!

Best of all, they are happy with her weight, so we can stop tube feeding her milk!!!

Water we can still give because she still needs between 30-34 oz of fluid daily.

The nutritionist said that she's in the 50 percentile for her height (not for her age).

The goal is to continue giving her 16-18 oz of pediasure by mouth plus her meals. We won't worry if she doesn't drink it all. BUT if we notice her weight starts to drop, then we will have to tube feed her at night.

We return in three months and discuss the possibility of taking out the tube (if she does well without using it)

HELP US! Do this for Elyse and the rest of the children with PHACE Syndrome.

2008-12-12T09:36:00.001-06:00

PLEASE HELP US & SIGN THE PETITION, WE ARE TRYING TO GET FUNDING TO DO RESEARCH.

The Hemangioma Investigators Group has formed a consortium to address the need for research into vascular anomalies and PHACE Syndrome. This petition is in reference to RFA for the Vascular Anomalies Rare Disease Clinical Research Network

As a community of patients and families and friends who are living with vascular anomalies/PHACE Syndrome we are appealing to you to consider this application favorably. There is much to be learned about these diseases and the only way that will be accomplished is through research and trials.

While vascular anomalies are not new, the diagnosis of PHACE Syndrome was first reported in 1996. PHACE Syndrome is a rare disorder that requires the collaboration of medical disciplines including, cardiology, dermatology, hematology, oncology neurology, radiology, and surgery. There is a wide spectrum of symptoms and complications involved in vascular anomalies/PHACE Syndrome. PHACE Syndrome and the entire spectrum of vascular anomalies have been inappropriately diagnosed and managed due to an inability of the medical disciplines to collaborate on diagnosis and treatment.

Since the first reports of PHACE Syndrome appeared in the literature, there has been an increased interest by physicians and scientist. Medical Institutions across the country have recognized the need for multidisciplinary teams to manage patients and have supported research targeted at developing treatments. Unfortunately there is no funding for vascular anomaly research. The lack of funding for vascular anomalies has limited research and this is directly affecting how the growing number of diagnosed patients are managed each year. Patients and families are left with little information or understanding of the long term implications and treatments of PHACE Syndrome and other vascular anomalies.

NIH Funding for the proposed consortium would help provide desperately needed knowledge and understanding to disorders filled with so many unknowns. Our hope is that by finding solutions to complex vascular anomalies like PHACE Syndrome, there will be applicable treatments and insight into the more common vascular anomalies like hemangioma and vascular malformations.

Our patient/family led groups as well as patient advocacy organizations have been pleased with the representation within this consortium. There are doctors from many different specialties and many different medical institutions working together for one common goal. These dedicated researchers and scientists have been involved in every aspect of managing vascular anomalies/PHACE syndrome and are committed to moving forward. They have created an innovative proposal and our groups enthusiastically approve of their efforts.

By signing this petition we, as a community of patients, family members and friends show our support for requested funding by the NIH.

http://www.petitiononline.com/NOVA2009/petition-sign.html

Torturing Boo Boo

2008-12-08T23:28:00.000-06:00

Cousin Ethan sleeps over

2008-12-07T22:54:00.010-06:00

From Collages

Grandmas xmas tree

2008-12-07T20:43:00.000-06:00

Cousin Erin

2008-12-07T20:41:00.000-06:00

Look a Teletubby!

2008-12-07T20:34:00.001-06:00

BOO BOO

2008-12-07T20:06:00.002-06:00

STOMACH BUG

2008-11-23T15:08:00.001-06:00

Elyse got a stomach bug. She doesn't want to take anything by mouth. Not even yogurt which is her favorite. i'm having to tube feed her 2oz pedialyte every hour. In a bit i'm going to try to blend some banana and try rice later. I hope i can get it thin enough to pass through her tube.

My poor mamas. She has been very good (behavior wise). She's been laying all day in her crib. She only complains when i pick her up to change her. I think her stomach is sore. I've also been washing all day. Each time she poops, it runs out. This morning she threw up three times.

Friday lab results were normal. I'm upset because someone forgot to check for the thyroid levels. Her pediatrician might of forgotten or the nurse who wrote them. Of well. At least everything else is ok.

We did take her to the ER after her lab work. We figured since we were there, we would take her to the urgent care. i should of known better. with her medical history, they put us in the ER instead. Big waste of time of course. 3 hour wait. They only tested her tube to make sure it was working properly, then they sent us home and yea. that took three hours.

tomorrow her pediatrician comes back from vacation and she said she would call me. well see how elyse is doing.

we are lucky that right now she has no fever.

worried

2008-11-21T07:59:00.000-06:00

i'm beginning to worry about elyse. this week, she has not been herself. she looks very tired. her left eye isn't focusing (meaning it's wandering more). her eyelids are red and swollen looking. not eating as well. not urinating much. yet no fever and even though she is a little more whinny, she still seems very alert.

i'm glad today we are getting her blood work for her thyroid checked. I'm hoping it's going to also tell us if something else is going on. Her pediatrician also added to the order to check liver functions, electrolytes, CBC and anemia

today's nurse, who hasn't seen her since last week. called me because she thinks elyse isn't herself either (so i know it's not just me).

i've asked her to bolus feed her some of her formula since she isn't drinking anything. She is also going to check her feeding button because i changed it for the first time two weeks ago and it was my first time doing it. And i'm terrified that i did it wrong or hurt her. it's very simple to change, but still. She cried and i'm nervous. So nervous that last night i even dreamt about it.

so weird that i've been trying not to worry about her, yet i dreamt that i was trying to analyze what was going on. I dreamt that i ended up taking her to the hospital and they swabbed her stoma and that it was infected with was why she was acting weird.

scary times

2008-11-20T12:40:00.000-06:00

Today wasn't a good day at work. The firm let go of people. Rumor is 55 firm wide in different departments. So far, no one in our billing department was let go. We were told last week that overtime was no longer approved and this is our busiest time of the year. At least now we are gratefu to have our jobs.

Elyse & Quinn (Video)...

2008-11-17T10:25:00.000-06:00

I'm borrowing this clip from Quinn's blog.

As some of you know... Elyse has a little issue. She loves, LOVES... to pat people heads. She mostly loves to torture (well she's showing them how much she loves them) boys.

Here Elyse is "showing Quinn Love" as Jen puts it. =)

I think we are going to have to address this little problem of hers with her developmental therapist again... because can you imagine her doing this to all the kids in school!

But anyways. I think this video is going to haunt Elyse for the rest of her life. =)

Yikes!

2008-11-11T14:00:00.002-06:00

Well they are starting to cut our nursing hours.

Currently we are supposed to get 80 hrs every week, so far they have only gotten us 72. Beginning this saturday, November 15, they are cutting down to 70 hours a week. Not bad since we are only getting 72.

I believe our hours will continue to go down as the state will begin to use a new evaluation tool. I am pretty confused as to when this will happen.

Oh well.

Conference pictures & video

2008-11-08T23:20:00.003-06:00

Make an on-line slide show at www.OneTrueMedia.com

HALLOWEEN PICTURES

2008-11-01T11:08:00.015-05:00

BUTTERFLY

COUSIN ETHAN (BAT)

HUGGIES TO ETHAN!

TIA MIMI & COUSIN ETHAN

GRANDPA

THE GOOSE THAT LAID THE GOLDEN EGG...

ELYSE'S RIDE

COUSIN NATALIE HELPING PUSH ELYSE

COUSIN NATALIE (WITCH)