Long overdue update

So it’s been a while, a VERY LONG while. Life gets in the way and I can promise you when you don’t hear from us, it’s because there’s nothing but NORMALCY to report.

I’m not sure what happened to most of the links on this site, I will take a look when I have time (ha) to figure it out.

I’ve been reminded by my husband, my family, my CHILDREN (who are now old enough to read this blog and POST comments on it!). So here’s the very long, very overdue update.

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Olivia's 4 yr checkup

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.

Quick Update

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.

Please stop by both websites to offer your support and prayers.

Please keep both families in your prayers.

Can we get off the ride now please?

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.