Can be found here: CT Champion Blog I will be updating here and there with the same information.
You can also view her champion page: Children’s Miracle Network Hospitals CT Champion or all the champions: Children’s Miracle Network Champions
Olivia was invited to the medical center to talk in front of the CT Costco employees today. They had a birthday party, celebrating the Medical Center’s Sweet 16. Olivia did a great job sharing her story to the 10 Costco employees. We then had the pleasure of a tour of the PICU (holy moly, MEMORIES). I was quite uncomfortable to be honest, because it brought EVERYTHING BACK for me. Olivia was most fascinated by the family suites, which she had never seen before ;).
I mentioned to the PICU staff that Olivia had stayed with them 3 times, and they were THRILLED to find out she was a patient of Dr Mello’s.
Interesting tidbit about Connecticut Children’s – they filter the air 4 times as often as a “regular” hospital. And that’s why it never smells “like a hospital”.
We stopped in to see Felice Heller (LOVE HER). It was so great to be able to visit under good circumstances.
And … it’s OFFICIALLY official!
Connecticut Children’s Medical Center press release
The picture above is her “Champion” picture taken by Auntie (Heidi) this past November.
I did it. I bit the bullet and gave in and we got rid of the pacifier.
Here’s how it went:
Yesterday morning Olivia cried the ENTIRE way to Diana’s for “Rah Rah” (pacifier). I thought about it all day and decided the best way to handle it was to cut the pacifier off the stuffed dog (it was sewn on). And then when she asked for it, we’d hand her the dog.
We got home and of course, she asked for it. So Arnie brought it out. Immediately she put it to her mouth … wait? What’s wrong? I told her ‘rah rah’ is broken and she CRIED big big tears. She was SO sad. Maddie was LIVID that Arnie cut the pacifier off – she couldn’t believe it! “Why did you do that to her Rah Rah?”
So she’s walking around with ‘rah rah’ and every once in a while she’ll put it to her mouth and then look at me and say ” Rah rah broken” with a very sad look on her face. She slept well last night but woke up earlier than normal this morning. Of course first thing she did was show me that Rah Rah was broken. Poor baby girl!
I’ve switched over to a new design which will allow me to update much easier which means … MORE UPDATES! I’ll be able to quickly document cute things miss Olivia has done. I’m also going to branch out and update about Maddie Rose as well.
You’ll notice you can comment to each entry as well . I left the old guestbook up, but this will be easier to track.
Finally if you look to the left, there are different sections.
I will still be keeping the Announcement Email List but I won’t be sending out announcements daily. Only after appointments or things like that.
So feel free to dig around and drop us an email or comment if you have any questions or concerns.
Olivia has been sick so I’m going to update from the beginning. Note that she’s doing great – just likes to make things interesting for everyone.
April 29 – May 6: We’re in Disney. Olivia had a GREAT time and was so easy going.
May 5: We note that Olivia’s coming down with a cold.
May 17: Olivia is very fussy over dinner. I take her temperature and it’s 101º+ after tylenol.
May 18:
102º+ fever. I stay home and take her in to see Dr. Friedman. Ears are clear and throat is red. Assumption is sinus infection and we’ll treat her with 3.5ml of omnicef (antibiotics – 250 mg / 5 ml) once a day for 7 to 10 days.
May 19: Still running a fever.
May 20: Fussy but no more fever.
May 21: REALLY fussy. I noticed she had a rash behind her ears which I assumed was relating to not rinsing enough after the bath so I put some lotion on it. I had to take her out of church during Mass because she was REALLY fussy which has NEVER happened before. I then notice the rash is EVERYWHERE (belly, back). Her cheeks were red.
Arnie calls Dr. Friedman after Mass and she feels it’s just part of the virus (fever, rash) so not to worry. Olivia ate next to NOTHING all day and then was up more than half the night. This is SO not our Olivia so we’re both a bit freaked. No fever but definitely not herself. We finally put her in our bed at 2AM because we’re all exhausted. An aside Maddie comment: the next morning we told her we were tired because Olivia was awake all night. She said “Why didn’t you wake me up?” HA!
May 22: Rash is much lighter in the morning but gets worse as the day goes on. Arnie stays home and takes her back in to see Dr. Friedman. She believes it’s still related to the fever but just in case she recommends stopping the omnicef because it’s a new drug for her and maybe that’s causing the reaction. We start her on benadryl as well to help.
Olivia finally ate decent last night (pasta). So I think we’re over the hump. I don’t like things that can’t be explained with her – it’s scary stuff.
Now on to the good stuff!
Talking
Miss Olivia is a talking fool! The girl doesn’t stop. She says so much it’s unreal. A few highlights:
There are a ton more, but these are the ones she’s most recently picked up.
I’ve been very bad about updating! Â We’ve been so busy with life and everything in general that Olivia’s site is last on the list and gets put off.
All is well with us. Â Olivia had her first double ear infection last Wednesday (4/12/06). She had been running a fever on and off for about 5 days and I figured it was time to bring her in due to the long holiday weekend. Â Never have I seen a parent and doctor cheer over a child having a double ear infection! Â But we did. And we’re thrilled it was something so “simple” and she didn’t need to go in for bloodwork. Â Olivia took zithromax for 5 days and is now back on her amoxicillan.
Olivia was exposed to Fifth Disease
earlier in the month. This is a typical childhood virus that causes a child to get bright rosy cheeks (looking like they have been slapped). Â We believe this was part of the reason for the fever. My sister, brother in law, both nephews and my mother have it this go around. It hits adults much harder than children. Â Ironically it was my exposure to Fifth Disease that brought about Olivia’s diagnosis of her heart defects when I was pregnant with her.
Olivia is definitely going to be 2 this year. She is testing boundaries and has her own opinion on how things should be!  She wants to walk all the time (no time for carriages or strollers in stores anymore).  She tells you NO if you ask her to do something she doesn’t want to do.  She’s a bundle of energy and a joy!
Swimming has been a lot of fun with her recently. She has NO fear and LOVES the water. She actually will put her face in the water, take it out and then laugh hysterically. Â Her instructor, Miss Kimberly gets such a kick out of her. Â We’re trying to get Olivia to be able to stay upright in the pool without me having to hold on to her. Â We are now using a bubble and a quarter (floatation devices) with the one full bubble on her belly (a first for Miss Kimberly). Â We’re not sure if it’s just that Olivia likes to put her face in the water or it’s the way her muscles are from the surgeries, but with the one bubble on her belly and the quarter bubble on her back, we’re finally to the point that I can let go of her for a second and she doesn’t end up face down in the water.
Olivia’s newest trick is removing her diaper in the middle of the night.  On Sunday morning Arnie found her without a diaper and soaked from the waist down. And this morning I found her in a similar predicament but her diaper wasn’t fully off. Thank God for that one because she had a little present in there for me.  A good friend of mine suggested I put her diaper on with the tape backwards so we’ll try that tonight.
T-10 days until Disney. I am very unorganized this time around – or I feel unorganized. I have the major things ready but I feel I’m forgetting something. Â I need to review my lists again.
So that’s all from here. We’ll update again after Florida unless anything comes up in the meantime!
Olivia had her 20 month checkup today with Dr. Friedman. Â Olivia was just shy of 24 lbs and was 33″ tall. Â 25 – 50th percentile for weight and 50th to 75th percentile for HEIGHT! Â Go Olivia! 🙂 Â Dr. Friedman got a blood pressure reading of 80/40 on her so the analapril is working! Â And so no need to go back specifically for frequent blood pressure readings. Â Her heart rate is 129.
We talked about whether or not we should switch her to 2% milk. Dr. Friedman said her LAST concern is clogged arteries and that if when Olivia is 75 years old she has them, she can dig up Dr. Friedman to yell at her. Â It made me smile to hear her talk about Olivia in such long term figures.
We talked about vitamins. Olivia is still on poly-visol with iron (a liquid form). Â I felt that despite brushing her teeth we’re seeing some staining from the iron. Â Dr. Friedman confirmed the staining and suggested we use a battery powered toothbrush on her. We are switching her over to a chewable vitamin once this bottle of vitamins is finished.
Arnie brought up the pacifier (aka “pluggy” or “duck” or “rah rah” (for the dog)). Â Arnie wants to get rid of it. I’m just not ready yet. Â Dr. Friedman sides with Arnie and said now is as good a time as any. Â Especially since she has no procedures for a while. Â I’m just not ready to give it up. Â It’s her one vice. Â Plus she’s most likely our last baby so it’s that much harder. Â Maybe when we get back from Florida?
The most exciting part of the appointment was that we were able to get an oxygen reading of 89% on her! WOOHOO! Â Everyone was clapping and cheering!
Our next appointment is not until August 5!
We took Olivia for her synagis / blood pressure appointment. Olivia weighs approximately 24 lbs (wearing onesie, pants and dry diaper).
Dr. Friedman has a pulse ox machine (to check oxygen sats). For some reason Olivia has decided this is the one thing she refuses to have done. Be it the finger clip or the “bandaid” or even just holding the sensors on the side of her foot. We tried for 15 minutes before calling a truce. I’m thinking we’re going to end up having to buy a machine just to get her used to it.
Blood pressure was very good. Dr. F thought it was 85/45 which is perfect.
After last week’s appointment, I emailed Dr. Heller regarding Olivia’s blood pressure reading and heart rate. Â Here’s my email to her:
Should I be concerned about her heart rate increasing while her blood pressure dropped? And the weight loss – is that something to be concerned about?
Dr. Wolkoff recommended Olivia get one last synagis shot so Dr. Friedman and I are working together to get the ball rolling on that.
Thank you in advance for your response!
Tricia
She responded this morning:
I’m not too concerned about the HR. It has been in the 130’s on several recent visits with me – which is fine in an awake toddler. What are you basing her “normal” HR on? The HR varies so much from minute to minute in little kids – I wouldn’t rely on one or 2 isolated readings.
Enalapril shouldn’t affect HR, in any case. Did they have an easier time getting the BP than I did? That is an OK reading, but I’d like to see it even lower (if the reading was reliable). Ideally, the top # should be 70’s to 90’s. We have room to go up on the dose, if her BP trends are on the high side. Maybe we can check BP more frequently?
This can be done by visiting nurse, or quick doctor visits. Let me know your thoughts. How is her appetite now? We’ll have to keep an eye on her weight. I’ll be back in the office Monday.
Take care
