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Search: Posts Made By: twinmommy
Forum: Help and Resources for Hemangiomas 11-19-2012, 05:08 PM
Replies: 7
Views: 8
Posted By twinmommy
My daughter required surgery, actually 2 (the 2nd...

My daughter required surgery, actually 2 (the 2nd was emergency). This was only because her hem was growing very rapidly, and into her eye, and affecting her vision. This was mandatory.

I do not...
Forum: Help and Resources for Hemangiomas 07-10-2012, 11:16 PM
Replies: 5
Views: 6
Posted By twinmommy
Do the laser treatments cause the babes any pain?...

Do the laser treatments cause the babes any pain? I'm looking into this for my daughter.
Forum: Help and Resources for Hemangiomas 07-16-2011, 09:18 PM
Replies: 11
Views: 483
Posted By twinmommy
my daughter had to have surgery too, no choice as...

my daughter had to have surgery too, no choice as hers was giant (on cheek) and had ulcerated. We had just started the beta blocker too. I worry very much about the scar, as hers can't be...
Forum: Help and Resources for Hemangiomas 06-27-2011, 08:04 PM
Replies: 5
Views: 6
Posted By twinmommy
Katie, she is being seen at children's los...

Katie, she is being seen at children's los angeles, Dr. Panossian... they are getting her in today at 1:45.... I'll KUP.
Forum: Help and Resources for Hemangiomas 06-25-2011, 09:07 PM
Replies: 5
Views: 6
Posted By twinmommy
So disappointing, hemang. still growing

Hi all, I had thought after 2 surgeries that we could have some relief from this evil hemangioma... I have been taking photos every day since Ruby's surgery because I felt like I wasn't sure if I was...
Forum: Help and Resources for Hemangiomas 06-15-2011, 05:08 PM
Replies: 36
Views: 37
Posted By twinmommy
This photo makes my...

This photo makes my day

http://divavelveeta.com/misc/after.jpg
Forum: Help and Resources for Hemangiomas 06-13-2011, 01:08 AM
Replies: 36
Views: 37
Posted By twinmommy
taken...

taken yesterday:

http://divavelveeta.com/misc/ruby9.jpg
Forum: Help and Resources for Hemangiomas 06-13-2011, 01:03 AM
Replies: 36
Views: 37
Posted By twinmommy
Well I'm going to knock on wood, when I say that...

Well I'm going to knock on wood, when I say that today was the first happy day my baby Ruby had in weeks. We did not have to use the restraints, we realized that the bandages were what was making...
Forum: Help and Resources for Hemangiomas 06-11-2011, 04:30 AM
Replies: 36
Views: 37
Posted By twinmommy
My first chance to post, I've spent the week at...

My first chance to post, I've spent the week at the hospital; last Sunday night I found Ruby with blood on her face. Her sutures were leaking and she had a fever. We rushed her to the hospital in the...
Forum: Help and Resources for Hemangiomas 06-05-2011, 12:54 AM
Replies: 36
Views: 37
Posted By twinmommy
Got home a little earlier, I had a long night...

Got home a little earlier, I had a long night awake in a hospital chair that was not made for sleeping, in a room with 3 other sick kids - anyway,

The surgery went well, 2 hours of hell for me, but...
Forum: Help and Resources for Hemangiomas 06-02-2011, 06:51 PM
Replies: 36
Views: 37
Posted By twinmommy
aw, I got teary eyed reading that. My friend's...

aw, I got teary eyed reading that. My friend's daughter is 7 and is so sensitive, I can imagine her being upset too.

We are scheduled for tomorrow but still waiting for the insurance authorization....
Forum: Help and Resources for Hemangiomas 06-02-2011, 12:35 AM
Replies: 36
Views: 37
Posted By twinmommy
We are moving forward with surgery, it is...

We are moving forward with surgery, it is scheduled for Friday morning. The specialist at CHLA gave us the option to wait and see if the beta blocker kicked in, but last night it was bleeding and we...
Forum: Help and Resources for Hemangiomas 05-30-2011, 10:14 PM
Replies: 36
Views: 37
Posted By twinmommy
a) super glad I had purchased diaper covers,...

a) super glad I had purchased diaper covers, never even started cloth diapering but was planning to after they were a little bigger
b) was double super glad I had made those pacifier clips (never...
Forum: Help and Resources for Hemangiomas 05-30-2011, 09:45 PM
Replies: 36
Views: 37
Posted By twinmommy
I'm having to restrain my poor baby :(

Ruby's H. ulcerated and has gotten VERY large. :(

She has proven to be a relative of houdini, able to escape from ANY swaddle (and believe I've purchased every one on the market, muslin, cotton, you...
Forum: Help and Resources for Hemangiomas 05-27-2011, 04:05 AM
Replies: 3
Views: 4
Posted By twinmommy
She is 8 weeks on Saturday (twin, adjusted age 4...

She is 8 weeks on Saturday (twin, adjusted age 4 weeks).

I asked about flavoring and they said they had cherry, but I need to request it next time. I ended up giving it today with half/half diluted...
Forum: Help and Resources for Hemangiomas 05-26-2011, 03:45 PM
Replies: 3
Views: 4
Posted By twinmommy
How do you administer your Propranolol??

Ruby got her meds yesterday, I gave it to her with a little apple juice (med is not flavored, or rather has a medicin'y taste). She projectile vomited shortly after (she has reflux) and now I'm...
Forum: Help and Resources for Hemangiomas 05-22-2011, 07:11 PM
Replies: 28
Views: 29
Posted By twinmommy
Ruby passed her EKG and other testing and was...

Ruby passed her EKG and other testing and was approved for med. They do not use propranolol, they are going to use acebutolol . She is going to be part of a study.

Unfortunately while I was burping...
Forum: Help and Resources for Hemangiomas 05-15-2011, 06:40 PM
Replies: 7
Views: 8
Posted By twinmommy
IMO, if it is growing rapidly and on the face,...

IMO, if it is growing rapidly and on the face, get a 2nd and get going on treatment. My ped. (at first) said "wait and see) but my daughter's grew so fast it took over her entire cheek in just 4...
Forum: Help and Resources for Hemangiomas 05-15-2011, 06:25 PM
Replies: 24
Views: 25
Posted By twinmommy
My daughter started timolol 10 days ago, which...

My daughter started timolol 10 days ago, which isn't long, but just a note that we have seen zero side effects. She will start systemic meds in about 2 weeks, we are awaiting results from blood...
Forum: Help and Resources for Hemangiomas 05-13-2011, 07:23 PM
Replies: 28
Views: 29
Posted By twinmommy
The derm they sent us to last week had not a clue...

The derm they sent us to last week had not a clue what to do, so she googled and saw some docs use timolol (eye drops) as a topical. She took the "it couldn't hurt" approach and prescribed it.

When...
Forum: Help and Resources for Hemangiomas 05-12-2011, 10:12 PM
Replies: 28
Views: 29
Posted By twinmommy
This is amazing! and great to know :)

This is amazing! and great to know :)
Forum: Help and Resources for Hemangiomas 05-12-2011, 10:11 PM
Replies: 28
Views: 29
Posted By twinmommy
We got in to CHLA, they were willing to accept...

We got in to CHLA, they were willing to accept the HMO price and Ruby saw the specialist (director) yesterday. They are doing something unique there, they compound their own medicine like propranolol...
Forum: Help and Resources for Hemangiomas 05-07-2011, 03:14 AM
Replies: 28
Views: 29
Posted By twinmommy
Thanks to my diligent pediatrician we got pushed...

Thanks to my diligent pediatrician we got pushed thru for out of network to have Ruby go to Children's Los Angeles... also the derm I saw this week spent her day off researching timolol! How cool is...
Forum: Help and Resources for Hemangiomas 05-05-2011, 12:24 AM
Replies: 28
Views: 29
Posted By twinmommy
Well we saw the derm. today and I gotta tell you,...

Well we saw the derm. today and I gotta tell you, I was not feeling very hopeful once I saw their website was all about botox and cosmetic surgery. Luckily the doc that saw her admitted she should be...
Forum: Help and Resources for Hemangiomas 04-30-2011, 09:49 PM
Replies: 28
Views: 29
Posted By twinmommy
I have learned a ton on twiniversity!! great...

I have learned a ton on twiniversity!! great resource!! sorry so short typing w one hand w sleeping bub on other :)
Showing results 1 to 25 of 32

 
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