Overall it was a great appt.

She weighed 34 3/4lbs and was 39 3/4″ tall (weight gain of 4 1/4 lbs and grew 2″ since February) cheering.gif She is staying on her growth chart of just shy of 50%.

The eye exam didn’t go well at ALL - she claimed she couldn’t see when we covered one eye up. More info on that in a minute.

BP was 88/? - the lower # isn’t as important as the high # which was perfect.

She and I both got our flu shots. Arnie and Maddie will go next week to get theirs.

We discussed the antibiotics - do we need to increase the dose? She said yes and then said “have you tried chewable antibiotics with her?” I was thrilled to be handed an rx for those! We’ll fill that via mail order - so no more every other week trips to the pharmacy!

She’ll need an updated pneumovax vaccine at 7 yrs old.

Next year she’ll need the following shots: MMR / Chicken Pox booster and then the DTAP and Polio (which are one shot now).

Now about the eye exam: we are going to make an appt with a pedi eye dr. She could have some sort of thing going on where she can’t see well out of one eye - the fix for that is a patch and / or drops to blur the “good” eye and make the bad eye stronger. She commented “thankfully we found this now and not before” - I am not nervous about it at all - at least there’s no surgery needed, right?

We have an appt on Tuesday morning at 8:20am. I’ll post an update after.

Greetings from Waltham, MA. I’m here for training this week and of course one of the girls has to be sick when Mama’s away!

The unlucky child this time is Maddie - our child with the immunity of steel. She started a fever on Saturday afternoon right after making her first communion. Sunday it was up to 103. Monday she was ok but not 100% so Arnie took her to see Dr. Friedman at 4:15pm. She was diagnosed with a sinus infection. Today she’s feeling almost 100% but woke up with a slight fever so Arnie stayed home with the girls.

Olivia had her INR level tested on Friday and it came back at 2.1!!! PERFECTION! We have to go back on May 30 for a retest. What a relief!

Prayers are needed for two of our heart friends.

First is our friend Sammy who is having his fontan tomorrow in Boston. Ironically I’m here in the Boston area so I’m going to try and get over to see them either tomorrow or on Thursday. Erika’s been a wonderful source of support for me and I’ll be happy to return the favor.

Second is for our friend who is having some issues with lower than expected O2 levels post Fontan. His doctors have decided he needs to have his fenestration closed. A fenestration is a small hole that was created in his heart during his Fontan surgery. (Note: Olivia doesn’t have a fenestration as Dr. Mello does a different type of surgery than they do up here in Boston). His mom Ruth describes it better than I do.

So we’re on for surgery on Monday.

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It’s never ending … truly it’s not.

On Tuesday we got a call from Katie, Dr. Mello’s physician assistant. Olivia’s urine test came back as having containments in it. She figured it was just from poor wiping (hey, she’s 3!) - so we were referred to Dr. Friedman’s office for a followup.

Today was our appointment. I didn’t think much of it and off we went. We did the “three wipe, then pee” test and she had a lot of white blood cells in her urine :(. Dr. Friedman said we were dealing with a UTI and to have a seat. Immediately I knew this wasn’t going to be good.

Due to her concerns for Olivia’s long and short term health - she wanted us to go in for a test that will check for renal reflux. They’ll do an U/S as well to make sure everything is where it should be (including looking for a spleen).

Olivia is now taking her normal amoxicillian for lack of spleen AND bactium (sp?) for the UTI. Somehow they got us an appointment with radiology for TOMORROW at 12:30pm to have this test done - and whether or not we’ll have surgery on March 24 will depend on the results of tomorrow and Dr. Mello’s opinion based on whether or not we need to have this resolved before surgery.

Olivia is oblivious to everything (thankfully). Arnie and I are tentatively hopeful that this is just a UTI - because she’s not showing ANY signs of reflux (no recurring UTIs, no frequent urination, and no fevers). BUT, it’s just a rollercoaster ride that we just want off of. We want to know that we’re going in for surgery on March 24. We want life to be “normal” again - we want normalcy again. It’s amazing quickly life changes …

I appreciate and respect Dr. Friedman’s cautiousness. She’s looking out for Olivia. She’s been doing that since Day 1 and we love her for that. She said “we just love Olivia” (sob). As I was waiting for the orders for the hospital to be faxed she came over and said “Do you need valium?” LOL. I said “no, I’m good” and then she hugged me. I know she loves that little girl as much as we do and appreciates how much Olivia has taught all of us.

So tomorrow we’re heading back to the hospital for a couple hours. Please pray this is NOTHING because I’m not sure I can deal with a setback at this point.

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Never a dull moment…

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Olivia received her adult dose of the pneumonia vaccine (pneumovax) yesterday.  She is covered for 10 years now!!!

Well, between new jobs and new schedules it is hard to find time to update the site.  Just know that no news is always good news with us!

We’ll go from youngest to oldest:

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Maddie & Olivia had their annual checkups with Dr. Friedman on August 1.

First Maddie - she’s 41 lbs and 43″ tall. She is VERY healthy minus some issues with frequent urination that we’re still trying to work out. And she seems to have developed a “tic” in that she blinks her eyes often. Dr. F doesn’t seem concerned about it and said it should go away on it’s own. Maddie needed a chicken pox booster - she didn’t even cry! Brave big girl that she is.

Now Miss Olivia - she’s 26 lbs and 33″ tall. She is doing GREAT. She was a bit “bluish” but we believe it’s related to this terribly hot weather we’ve been experiencing. She was due to receive an adult dose of the pneumonia vaccine but they weren’t in yet. So we’ll have to go back to get that when they come in.

Overall it was a GREAT appt and I’m so proud of my girlies!!!

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:

• Fresh (as in Maddie’s being fresh)
• STOP IT!
• Bad
• Mickey Mouse (comes out as “Mi-ee Mouse”)
• TV on?
• TV off
• stickers
• color (comes out like “yellow”)
• Duck
• Bird
• Kitty
• Hot
• Hot (for cold)
• Water
• Brush teeth
• ketchup
• ketchup (for toothpaste)
• Markers

There are a ton more, but these are the ones she’s most recently picked up.