Disney, ER, GI and A Princess Birthday

I'm slacking with the updates...forgive me, we've had so much going on!

On April 7 Fi and I headed out to Orlando. We had an awesome time and got to see my mom, as well as some of our other family who actually live an hour away from Orlando.  The highlight of our week in FL was of course going to Disney.  Fiona loved meeting Mickey and Minnie and the Princesses. Her favorite rides were Snow White and the Tea Cups (which she calls the soup ride...lol). Wish we could have stayed on vacation forever.

When we got home it was back to work for me and back to causing trouble for Fiona. She was acting tired, then she started running a high fever wt hich we were having trouble bringing down. We ended up in the ER where she was diagnosed with a URI, and we were just told to keep up with the meds.

The next morning we had GI. Dr F said Fi looks great, except that in a huge shocker (jk) Fiona isn't growing...again. I figured this would happen with going milk protein free again. Fi's around the same size she was in Oct, however Dr F only seemed concerned about her drop over the last month...yeah whatever, I saw the chart and I know it's a bigger issue. She's always struggled and now I'm worried that we're looking at going back on a formula, but I'm not convinced Fiona will drink it if we have to go that route.

The next day (Fri) Fi wouldn't drink or eat anything and was complaining that everything was too hot. So we got squeezed in at Dr Es. Dr E checked her throat, which the ER had not. Well her throat was full of ulcers so she started her on antibiotics. Luckily, Fi was really doing better a couple days in...so thankful she was better in time for her birthday.

Which brings me to yesterday...Fiona turned 3! Yes birthdays are a big deal for any child, but when you've gone through everything she has, it's an even bigger mile stone to celebrate. We had a small Princess pool party and Fi had a great time. She spent most of it pretending to be a pirate and playing with her bestie Lydia. She got lots of awesome gifts and wished for a boat when she blew out the candles. My baby is officially a big girl.

It was 3 yrs ago today that my precious newborn was taken from my arms for an echo to investigate her  "innocent heart murmur" and a few hours later she was in the NICU, critical and being stabilized.  Today is the anniversary of the day our worlds were forever changed, "there's something wrong with her heart." I will post more tomorrow on her heartiversary...but April 29th , even being one of the worst days of my life, is also one of the best. It is never far from my mind that she could have easily gone undiagnosed until it was too late, so it truly was a blessing in disguise.

GI & Behavioral Therapy

Yesterday we saw Dr Charles for a follow up and also had our first visit with Dr Clendaniel, the GI behavioral therapist. It was a good apt, I think that it's obvious to everyone that she is really doing better. I hate to think that milk was being that huge of a problem, but after 2 monthsish with no milk it's really like night and day from where we were. We did have a time when she was on Elecare that she had been doing amazingly well and it seems that this girl just can't tolerate milk period.

I also think that using the senna more has helped, Dr Charles is afraid if we do it too often she'll become dependent which is my fear too. Now he wants us to wait 2-3 days before giving it if she hasn't gone, I'm hesitant though because I know how quickly things can spiral with her and also that many times she doesn't fully empty...so I'm going to do it my way, because it's working and I don't intend to be doing weekly cleanouts again any time soon.

Dr Clendaniel was very nice, though I'm fairly certain I could have come up with the same ideas on my own lol. She gave us some charts, to work towards potty training. Basically if she goes, or doesn't go as long as she sits for 2 minutes she gets a sticker. We will mark if she does go, did she pee, did she poop. I'm waiting until thursday to start since I'm off and it's very scheduled. I want to make sure we get all set up before I turn over the reigns to anyone else.

One thing that I found strange was that Dr Charles said that since Fi's poop is soft she is probably with holding until she absolutely has to go. He feels that she's afraid to go. However, she does ask to go potty and she will actually poop almost every time. Dr Clendaniel said that she doesn't think it sounds like she is fearful...who knows. What I will say is that I'm 100% convinced that Fi can not pass solid stool, ever since her very first somewhat firm stool at 2-3 wks she has been unable to pass them, I just feel like there's something else that we're missing.

We go back in a month, so hopefully by then we will be able to see how things are going. We'll also see Dr Fortgang next month and I'm curious to get her input especially since Fi's growth has stalled again. She's 27.5 lbs and 34.5-35in

Cardiology Update

Today we had Fiona's 6m cardio check up. She did soooo well it was incredible really. Despite being in her words "really really grumpy" lol she laid there and let them get all the pictures they needed. It was our quickest apt of all time, we were literally in and out in an hour flat!

First off she had bp, pulse ox and ekg. Her bp was the lowest I've ever seen it at 80/69 (for her right arm). Pulse ox was reading in the mid 80s, luckily it was just the probe, and after switching that her sat was 95-97, and even hit 99 for a couple seconds...way to go Fi.

Next we had her echo and she was even good while they looked at her aortic arch, which is the part she usually hates. When she was done Dr Yang came in to talk to us. He said her aortic valve leak looks a little worse, but otherwise the valve looks stable and he thinks it may last a long time. Such a relief to hear that. Her murmur is significantly changed from our last apt and is now a 6 (the loudest possible murmur where you can feel the murmur through their chest without needing a stethoscope). Since her obstructions are nearly the same as last visit I'm not sure why the murmur changed so much, guess I should have asked lol.

He did ask us lots of questions about her endurance and if she's ever passed out. Thankfully she hasn't, but he made sure to tell us a few times that if she ever faints we need to call him immediately. I mean of course we'd call if it happens, it's just weird that he's never mentioned it before. I wonder if at this age they tend to push themselves too much or something...not sure though?

All in all an awesome apt and we don't need to go back for 6m! By that time she'll probably be in preschool, it's crazy!

Always Something Around Here

Wow, I didn't realize it had been almost a month since my last post. Like usual we've been pretty busy. Fiona was diagnosed with allergies and possible asthma after having a dry persistent cough for over a month. She was started on Singulair and Nasonex.
We've yet to really see whether it's helping because 3 days in she came down with URI and was hacking up a lung all day and night. After 3 nights of no sleep we called her ped who had us stop the Nasonex for now and gave her codeine to help her sleep. It was a welcome relief, with some unwelcome side effects...lol. She's doing better now though so we'll probably be able to take her off of the codeine in the next few days.

At this point she's on Miralax (4x a day), Senna (1x a day), Singulair (1x a day), and Nystatin (2-3x per day) and codeine for now, then back to Nasonex when she's better...I know 5 meds isn't a ton, but sheesh it gets old. We're lucky that Fi's great about taking her meds, but with her going back and forth from my house to her dad and grand parent's it's a lot of keeping up on our end.

This week we'll see Dr Yang for her 6m cardio check up, hoping that everything looks the same. So far the degeneration in her aortic valve has been slow and we really want it to stay that way. I never really get nervous for her other doctors, but cardio always worries me because in the back of my mind I know that we could go and hear it's time for another surgery.

Urology Appointment

Yesterday we had our 1st uro apt. Despite being exhausted from having to get up extra early it was awesome because being the 1st apt of the day we were in and out in a little over an hour! First like always they went over her history and why we were there. Then they took her to US. It was a very quick one to measure her bladder, then back to the room to wait on the doctors. 1st the resident came in talked to us for awhile taking more history. She then told us that Fi's US showed that her bladder capacity is really high for an almost 3yr old, and that despite having soaked wet diaper right before the scan she was still about 60% full.

Then we waited for her to come back with the urologist. He said, "she clearly has alot going and I'm not surprised that she's having urinary problems" It was good/ not good to hear that, I always worry that a new specialist will look at her and be like, um, why are YOU here?

Anyway, for now he just wants us to watch her and how things play out. He feels that her constipation is a big factor in the urine retention. He also said that until we really attempt potty training we won't really see what the true extent of the urinary problems are or really be able to try to work on them with her. So he wants us to go ahead with the behavioral therapist to work towards potty training and come back in 3-6 months.

For now he gave us some info on how to try to prevent UTIs, since she's now at high risk for getting them, and also some other things to try to help get rid of the damn yeast infection. He says if we're still battling the yeast when we come back that he wants to do some further testing to see why she keeps getting them. Since it was a first visit and she's not potty trained he's waiting until our FU to decide if she needs to have urodynamics etc preformed. Overall it was a good apt, however, I'm not really thrilled that his only solution for when she has the screaming in pain episodes which have landed us in the ER twice is to give her motrin. At this point, I know that the pain will eventually stop and probably not bring her to the ER right away, but with a toddler it's hard to distinguish exactly what is causing the pain and I'd hate to miss something because it's just "bladder pain".

Quick GI Update

We saw Dr Charles today at Children's and he was really nearly horrified by the fact that she had gone through 5 cleanouts and 3 ER visits in one month. Of course it happened to be the month that he was out of the country lol.

He thinks that our current plan, no dairy, and 4, 1/2 caps of miralax is good since she's been doing better. He agrees that her getting sick in November was probably the trigger that set her on the down hill slide.

I asked him about several things today 1) her anterior anus and my findings about it requiring surgery, he doesn't feel that she does. 2)her reaction to enemas, he doesn't want her having them period 3)using senna and dulcolax, senna yes, but he doesn't want her using the dulcolax because it puts her anus out of her control 4)potty training, we will be getting into the GI therapy next month 5)urinary issues, he's still unsure if they are being caused by the constipation 6)gagging and spitting things out, still calling it rumination if it worsens she will need a scope to rule out esophigitis

So our current plan: follow up in 1 month. Use miralax daily, if no bm then we will do senna, if she goes more than 3 days without a true bm we will come back sooner and start therapy then. No fiber supplements. Keep and eye on her bowel habits and swallowing...and I think that pretty much covers it. We'll be back at Children's bright and early for urology with Dr Roth tomorrow.

Busy Bees

We've had so much going on around here. Last Saturday I went with some friends to the Endymion Extravaganza, for those of you who don't live around here, it's a Mardi Gras ball. It was held in the Super Dome for the first time since Katrina. We had so much fun and it was nice to have some mommy time. To go out and hang out with adults was nice esp since with all that's been going on with Fiona lately, I've been pretty stressed.

She's still been having some episodes of painful urination, and frequently going 12+ hours without peeing. We are seeing Dr Roth at Children's on tuesday for our first urology apt. Hoping that he can give us some insight as to what might be going on. I also want to ask him about the yeast infections, she's pretty much had one constantly for the past 5 months and frequent ones before that. Not sure if that's in the uro realm of things to deal with, but I hope so.

We also have GI (Dr Charles) on Monday so it should be a busy 2 days. Interested to hear their take on what's been going on. I also really want to talk to them about our ER experience and my concerns about ever bringing her back to that ER, it was awful!

As far as the constipation goes it does seem like she is improving since coming off of dairy...so fingers crossed that this was the solution that we needed. She's currently taking 4 1/2 caps of miralax a day and senna/ dulcolax suppositories as needed. We did the senna 2x a day for 1 week along with the 3 days of dulcolax and that was really the turning point. In awesome news Fiona has actually asked to use the potty and pooped on it 2 times! I'm sooo excited by this because I was really beginning to think we may never get to the potty training point with her. Since she's making progress on her own I really want to push to get her in the GI therapy program ASAP. I'm very sure now that her issue is not holding it in since she wants to go.

Of course with the good comes the other...lol. It's always something. I know I mentioned this months ago, but Fi has been still chewing up food and then gagging and spitting it out. She's also swishing her drinks in her mouth, sometimes swallowing, others letting it roll out of her mouth. So I plan to ask about repeating her swallow study. We had assumed that her dysphagia was gone, but maybe we've just been over looking the signs the whole time...idk. I definitely want to rule it out though because she was at aspiration risk and since she's been coughing a lot lately I want to make sure it's not an aspiration thing.

Even with all of the craziness we've still been having fun. Fiona had a great time at the parades and caught tons of stuff. She told me she wanted to go to parades today and when I told her that there are no parades, she said "but why not?"...lol. We did Chuck E Cheese, got pictures taken, bought dressers and I made her a new dress...no wonder my house is a mess lol. I'll try to update after each of her apts and also when I hear back from Cinci.