At grandmas block party

Neurology follow-up

Elyse had her 6 month follow-up with Dr. Cirillo. She is super nice and Elyse seems to like her, she even gave her a hug. I wasn't able to get their pictures cuz our nurse took my camera out of the diaper bag. =( Now we have to wait a year for a picture.

Yep.. one year follow-up!

The appointment went well. Dr. C was very happy to see her and was amazed of how well she was doing, like everyone else. She agreed with her hematology and will follow-up with him with some of concerns. They are in no rush for scans, since things are going so well. The only thing we are going to have done is a Transcranial Doppler Imaging Study. Then maybe do the scans in a year.

One big concern of mine was strokes. I needed to know if she was still at risk and the answer is yes. I asked if there were things we needed to avoid.  I really was hoping none, but she gave us a few - some will apply as she gets older, but it's still good to know.

1. roller coaster
2. ski trips - High altitudes
3. gymnastics
4. throwing into the air (daddy!)
5. chiropractor when it comes to her neck
6. high impact sports
7. flying in a plane - pending
8. Being anemic

She is going to do some more research re: flying & high altitudes places.  She even said that when she gets her hair done (when she's older of course) to be careful when her neck.  You know how your head position on the sink when they wash your hair? She won't be able to keep her head like that for long.

The concern is that she will not get enough blood supply to her brain and these things will make it difficult.  So that's scarry to know.  It's good, but nerve wrecking when you think about it. 

slumber party

Elyse had her first slumber party...

Saturday night Elyse and I slept over my sisters house. I also babysat Trinity, my friend/co-workers 3 yr.daughter.

It was an interesting night.

Trinity knockout. My niece was having a hard time because my sister is trying to get her to stop thumb sucking. She got her a thumb guard, so poor US couldn't sleep.

My sister, Elyse, Natalie and Coco (their chihuhuha)... we all slept on the bed. I think Natalie finally fell asleep around 12 PM.

The fun didn't end there. Around 2 AM it started thundering. All of a sudden someone decided to jump on the bed. It wasn't Trinity. She was still asleep in her sleeping bag. IT was Lila! My sisters lab. The stupid dog got scared of the thunder so she jump on us. lol. she was shaking the entire bed! Thank God Elyse nor Natalie woke up. My sister was trying really hard to get lila off, but she's about 50-60 lbs... and the more it thundered.. the more the dog got close to us. She got so close, she almost ended on top of Natalie.

Claudia had to get up. get the damn dogs bed and put it in the closet. That was the only way the dog got off.

So back to sleep.. UNTIL Elyse woke up. She stared crying and crying for no reason. She really scared me. I thought something was wrong. I think she missed her room. It took us half an hour to calm her down.

God, we were so tired yesterday morning. yet of course, all the girls had to wake up early!

It was fun. My mamas had lots of fun. I took a few pictures with my camera phone.



Click on the slide show to see the pictures bigger.

Tagged!

Three Things...

THAT SCARE ME:
1. BUGS!
2. REPTILES!
3. THE SOUND OF A AMBULANCE WHEN I'M COMING HOME.


I LOVE:
1. OUR DOCTORS & NURSES
2. TAKING PICTURES
3. SEEING HOW WELL ELYSE IS DOING

I HATE:
1. ORGANIZING ANYTHING IN MY HOUSE
2. DECORATE MY HOUSE
3. FILING AT WORK!!!!

I'M DOING RIGHT NOW:
1. this meme
2. TAKING MY LUNCH AT WORK
3. TRYING TO RELAX A LITTLE.

I CAN DO:
1. (i can't think of anything right now!!!)
2.
3.

I CAN'T DO:
1. ORGANIZE MY HOME =)
2. KEEP MY HOUSE CLEAN
3. STUDY THE RULES OF THE ROAD

THAT ARE MY ABSOLUTE FAVORITE FOODS:
1. CHOCOLATE Mmmm!
2. MOM'S POZOLE
3. MOM'S TAMALES

SHOWS I WATCHED WHEN I WAS A KID:
1. THE MONKEYS =)
2. I LOVE LUCY
3. I DREAM OF JEANNIE

I don't know who to tag! =(

My child is mean!

Geez... When Alex was Elyse's age, if i pretended to cry, he would hug me and pat my back and say "it's ok" or he would cry too.

Ohh but not Elyse. If Lalo pretends to hit me and I cry, she smiles and signs to him "MORE" when i stop crying. She'll even hit me, if he tells her too!

why is that?! Her DT said that it has to do with her being developmental behind, but I don't know. She seems to enjoy it too much. =) It just makes me wonder.

Have I ever mention how she cracks up if you trip or mess up? There has been a few times, in which I've drop something and I say something (you know what I mean) and she's just laughing her butt off. Do you remember in the video where she's first walking... how every time she fell, she would laugh? I wonder if it's because she hasn't felt pain, hurt? Sure she's experience needles, pokes and cuts from procedures... but not the normal stuff a child does. I guess in a way, she's been shield, right.



Yesterday I went to my block meeting in my neighborhood. We're doing a block party. It's the first time I meet my neighbors. Some of them know us because of Elyse's medical events when we first moved. but anyway, one older lady mention how Elyse was so light skin. Then she asked me if i ever take her out in the sun. I just laughed because I think in she was joking. I told her, actually No. We didn't because Elyse was very sick her first year. Some asked what was wrong with her, so i explained a little. They all said how wonderful she looked considering how sick she was. I had to agree. =)

Butter vs. I can't believe it's not butter

Opps!

I didn't pay attention to the fact that we were giving Elyse "I can't believe it's not butter" and it is isn't giving her the calories (fat) that the real butter has.

According to the website:

Butter contains: 100 calories
what we've been buying: 50 calories (we were getting the light version because we all use it)

http://www.nowyouknowbetter.com/Spread-The-Facts.aspx


That's probarly why that wasn't working for Elyse. I just spoke to the dietitian and she said that was a good question, so she suggested just using regular butter or the canola oil (2 tsp per meal).

Doucal

Elyse's dietitian from Wisconsin just called. She said Elyse's weight isn't were it should be. She wanted us to either increase her pediasure by 3-4 oz or add 2 tsp of fat (canola oil, butter) to all her meals every day. We currently are adding the extra fat and I definitly didn't want to increase her formula UNLESS we really have too.

I asked her about Doucal, it was something that other families suggested to me. She said that was a great idea. She said she had forgotten all about it. She said it's better than increasing the pediasure or adding the fat. YAY! We have to give her 5 scoops a day in her pediasure and that will give her the extra calories she needs.

She's going to fax the order to our HHC, hopefully there won't be a problem ordering it. Until then... we have to make sure to fatten up her food.

Any pediasure drinkers out there?

I think we may be running into a problem. WIC only has a contract to get strawberry and vanilla favor pediasure. Elyse won't drink strawberry. I've tried even mixing it with another vanilla bottle, but that didn't work. Elyse has been drinking vanilla flavored for 6 months and lately she's not interested. She only needs to drink two bottles a day, so far... she only 1 - 1.5 If she drank all of it, they may have us stop her feeding tube, as long as she doesn't lose weight.

We have tried blending banana, which she liked... but only for so long. Yesterday nurse Ida tried mango and she definitely didn't like that.

This weekend, we need to make a trip to Whole Foods for her yogurt, so i am going to pick up some chocolate powder and try that. She LOVES chocolate, so i hope that will work.

Does anyone have any recipes, ideas of simple shakes we can do?

Elyse shopping at Target a cute moment.

First she saw Ernie and didn't let go of him. Then I carried her over to look for a sippy cup and she kept babbling non-stop. finally i put her on the floor and behind me were the bibs. She ran over and pointed to Elmo. I said, yea... Elmo. She said.. "mo! mo!". Then she made a mess, she had all the bibs on the floor. Then i told her, all done... lets go. I put all the bibs back on the rack. I repeat to her, Let's go. She started to walk towards me, but then she remembered Ernie was on the floor, so she pick him up... then took one blue bib and saw the pink one and managed to take that one also. then she started walking towards me like nothing. I had to take a picture to send it to her daddy. It was too adorable and no, i didn't buy the bibs. I was tempted too, but damn... they were $5.99 each!





This is Alex.
Sunday, he and I volunteered at PAWS. They have a parent and child volunteer program, for three hours. It was our first time there. The person that is normally in charge of the program was out, so we didn't work directly with the doggies. We did clean a lot of windows! The doggies were so cute though. I sign up again, but because they only take a certain amount of teens, we have to wait until August.





Where's Elyse?

Silly girl! she is so darn cute. I had no idea she was playing peek a boo, until i realized she was giggling.

Wisconsin speech appointment

Elyse & her new baby waiting for Dr. A (her speech therapist)

Everything went well. She had her Mic button changed and saw the speech therapist in the GI department.

The speech appointment was long! Dr. A talked allot. She observed me feed Elyse and gave me some suggestions. She will see us again in a month when we return for GI on July 7 (I think).

We basically we need to work with her tongue. She pushes her tongue in when you feed her, like applesauce. Dr. A said it's her way of protecting her airway. This comes from being intubated & suctioned (while intubated) for so long during her first year. It's weird how Dr. A caught this and we never really paid attention to.

I gave in!!!

We got her ears pierced. I gave in. My family has been bugging me about it for months, so today we did it. It was a last minute thing. I pick out very small and simple earrings. I like them best for little girls.



Tomorrow morning we are off to Milwaukee, WI to see Speech & to Elyse feeding button changed.

Two Year Check up & 6 month Hematology visit

Tuesday, was Elyse's 2 yr check. We hadn't seen Dr. B since May. She was happy to see Elyse.

Elyse got one shot (hepatitis A). Her right ear has fluid, which is the ear the tube fell out, so we are keeping an eye on it... so far, no hearing issues or infections noted.

Her weight is a little low, I will not be surprised if they end up increasing her pediasure, but on the other hand Elyse grew!

weight: 23.8 lbs (10th percentile)
Length: 33 (25-50th percentile)
Head: 15 5/8 (3rd % percentile)

One thing her doctor noticed and wants me to let hematology is that her bottom lip is darker and puffier. Some I had noticed a while back and I just didn't want to bring it up because the thought of those growing... well i just didn't want to think about it. Plus she is doing good and it isn't affecting her in any way.

Also when she looked inside her mouth, she said that on the roof of her mouth, Elyse had a small red dot (hemangioma), well now it's bigger. I told her that we have noticed allot of redness every time she opens her mouth. I don't know if that was something that we should be concern because they seemed flat.

it was a nice visit. Elyse made her laugh allot. My child is spoiled... =D she is so used to having so much attention that she would go up to Dr. B and just stare at her when she was doing her notes. She would get very close until elyse's face was all in the doctors papers just to get her attention. it was too cute.

Thursday was her 6 month follow up with Dr. L, Hematology.
Again, he was also very happy to see Elyse. He said since things have been great, he doesn't have to see Elyse for another year!! yay!

He is going to consult with Dr. C, Elyse's Neuro re: her next set of scans. He really wants to do them once a year instead of every six months. The problem is that he has alway order her CT's, but Neuro prefers MRI. So instead of getting two every six months, he is going to suggest that every six month she get one, either a CT or MRI.

Re: Elyse's lips. He doesn't think they are hemangiomas. He also noted that they were fuller and darker. He tried to look inside her mouth, but Elyse wasn't cooperating. He said that as long as she doesn't have any issues besides the ones she already has with feeding... then we shouldn't be concern. I agree. Plus she is having her dental check-ups. That was basically it. It was a nice visit. Her doctors are alway nice to see.

After all the appointments, we went to my mothers house.

Elyse played with her cousins. At night we walk around and they look so cute holding hands.
Elyse forgets that she is their size... she wanted my niece and nephew to swing her like her daddy and I do.

Oh and she also tried to jump and fell! She saw the other two jumping and she thought she would do the same. That didn't stop Elyse from trying again, with my sisters help of course. Spending more time with my niece and nephew is going to help Elyse allot. I've seen so many changes in her. She is even learning to defend herself from Alex!

Alex loves to bug her. She normally looks at me, with these huge intense eyes - like telling me, aren't you going to do something? Now she's grunting and even pushing him away. I warned Alex that it might be cute now, but it won't be in two more years.