Now for Kyra...

Kyra's situation is becomming frustrating and stressful :( Each dr runs yet more tests and we find out more information, which is great, but frustrating that we're told that it is NOT what they'd previously told us. I hadn't blogged about it previously, but we found out last week from another set of scans and bloodwork that the rheumatologist decided that she does NOT have JRA.

So, they sent her back to the neuro surgeon, who she saw on Thursday. He sent us down to xray for another series. This time they wanted to extend her neck a bit more. They laid her body on a foam pad and had her hang her head over the edge. With this open angle they got a MUCH better picture of what's really going on at her C1/C2. What they thought was fusing turns out to be minor, normal fusing for her age BUT it revealed a small tissue mass. At this time, it IS putting pressure on her spinal cord, but it's not compressing it. Because of her age, the severity of a biopsy with it being against her s.c., and other factors, he wants to monitor it for the next 2mths before we go that route. She goes back in July for another MRI and Xrays and if anything has changed, or the mass has grown, we jump straight to a biopsy.

Every parents worse nightmare - the dreaded 'c' word. No one wants to hear it, no one wants to think about it. You want to hope for the best and not think about the worst. It's going to be a very long couple of months :(

Let's start with Liv.....

Olivia had her post-op appt on Thursday. They gave her us pathology report, and the cyst was actually larger than what she'd told us. They examined all the tissue she removed and while it wasn't totally connected, the way it was separated was considered one cyst, rather than two separate cysts. Labs showed it was indeed a thyro-glossal duct cyst, the two lymph nodes that were removed showed no malignancy! YEAH!!!!

She has been REALLY tired lately, so they ran a T4 and TSH and those came back totally normal!

We're supposed to keep an eye on her and take her back July 9th :) They said she still has quite a bit of swelling, but is doing great!

Bicycles & high heels

Wearing high heels while riding a bike may certainly get the neighbor boy's attention. Skinning yourself from head to toe will also get you attention - just a different kind.

We had a BBQ @ our friends' house & you guessed it, Ms. Savannah thought it would be a wonderful idea to take off on a bike (with heels on) down their gravel road.

This is the end result....

(I know it's not funny, but doesn't that last picture look like a mug shot??)

Olivia - more post-op pics

4-17 (before surgery)


5-15 (6 days post-op)


5-24 (15 days post op - bandage being held on by dis-solvable stitches is gone!!!)

Stop & smell the roses....

(any flower will do)

I love being reminded of the simple things that bring beauty and happiness to our lives.

It's so easy to caught up in the things that stress or worry us and even easier to forget to take the time to look around and be thankful for everything that surrounds us.

Cool, dude!

Brent got sunglasses last weekend, and since then they've been a permanent fixture :) Is there anything cooler??

Happy 'belated' Birthday, my love!

My honey celebrated his 33rd birthday on the 17th! I love you with all my heart! May God Bless us by having you in our lives for many, many, many more years!

Livy's recovery from thyroglossal duct surgery

I keep forgetting to post her updates and pictures :) She had surgery last Fri, May 9th...so, she's now 11 days post-op. She's doing pretty good. She is still wiped out from everything, she's been tiring easily and sleeping alot, but overall doing pretty good. She's still in quite a bit of pain & taking Tylenol w/ codeine, but we're no longer on a set 'every 4hr' schedule! WOOOHOO!!

The biggest woohoo of all...today was Olivia's 1st day back at school! She was SO excited and I don't know that I've ever seen a little girl so happy to get to go to school :) She has missed Ms. Mary & her friends.

Here are a couple of pictures of her stitches from last week after the bandages were removed....

BEFORE:



Last week - post op:

Kyra & Livy updates

Well, apparently *I* made a mistake yesterday. Crazy, right? Kevin could hardly believe it either. The perfect woman who knows everything was wrong and made a mistake *gasp* HAHA!!! (We are talking about me here, not Kevin :giggle) Anyway, some how between my phone pad and my online calendar, Olivia's post-op appt changed from May 29th, to May 19th. Uh-huh. So, guess who made the 3hr(+) trip to StL only to be told their daughter didn't have an appt? EESH!! Thank goodness, a nurse was able to see her, but he called Dr. J & she still wants us to come back the 29th. She wants to see for herself how she is healing and also go over the pathology report with us. The nurse thought everything looked ok and her stitches will be dissolved soon. Still no PE or physical activity until after the 29th - she is NOT happy about that!

However, the day wasn't in vain. Ky's rheumatologist & neurologist had recc she see one of the ophthalmologists at Children's to have her eyes checked out. When I called to make the appt, I requested the 19th, so it'd be the same day as Olivia's appt! LOL. At least we got that in ;)

They did the preliminary tests & then decided to dilate her eyes. We waited 30min for the drops to work and then went back in for more exams. He said at this time she doesn't need glasses, but with the way her eyes look, her current prescription, & the fact she has JRA (oh yeah, I haven't told you about that yet - it's coming LOL) he predicts she'll most likely need glasses by 1st-2nd grade. I wasn't too surprised by that, seeing how near sighted both Kevin and I are. Otherwise, her eyes look very healthy, but because of the JRA and the problems that can cause with the eyes, he wants to see her back in 6mths. Also, I asked him about her right eye (it droops and twitches when she eats - it has since she hit my mom's coffee table when she was 2, but it's gotten a bit worse). He said that it's called Marcus Gunn Syndrome & basically, just something she'll have to live with and we'll hope it doesn't get worse.

Ok, so back to the JRA (juvenile rheumatoid arthritis). While we were at Children's, I called Ky's rheumatology nurse to ask about Wed's CT result and to also let her know that while DrW discussed starting her on meds, he didn't actually do so. She said the CT results were back and she could read me some of what was on it that she understood, but she couldn't give me a full report or tell me what the plan of action would be. Before DrW contacts me, he writes up a full report for Ky's other dr's and he's currently behind on that. She said it would be Thurs or Fri before we hear from him. She said that the CT confirmed it's JRA and that her C1/C2 have already fused together and others are trying to fuse. She said something about a spot showing up, but she wasn't sure what that meant. She also said that her chart stated he'd started her on naproxen, but he didn't. So, we're just waiting for him to call us and then we'll go from there.

Kyra's rheumatologist appt/CT

Kyra had her appt with the rheumatologist yesterday. He said that her blood work shows that if it is JRA (juvenile rheumatoid arthritis) as he still suspects, then we've caught it early and it's just in the C1/C2 area and no where else. He says this is GREAT news and makes it very easy to treat. He sent us down after for her CT, which he thinks will confirm the JRA diagnosis, and then we will go from there.

He also wanted her to see one of the eye specialists there at Children's and we were lucky enough to get her an appt the same day as Olivia's post-op. I am SO thankful for that! It's costing us just over $100 in gas with every trip we make up there & we've been making alot of trips.

Kyra - the mystery continues

So, today was Kyra's appt with the neuro surgeon @ Children's Hospital. What a long, exhausting day!

It turns out, after actually viewing the MRIs, he no longer agrees with her ped neuro. Apparently, they'd discussed her case on the phone, but he hadn't seen her MRIs until this morning before our appt.

He said after looking over the reg MRI and her flow study, that the blockage was very minuscule in comparison to what he feels is the problem. He said the blockage is so minor, in his opinion, that it isn't worth pursuing surgery or meds as he feels neither will help as the blockage isn't the problem any way.

What he saw that concerned him was 'major inflammation' at C1&C2. He said the reason this 'gets him excited' is because any time you are talking that kind of inflammation in that area, you are risking bones and joints moving that aren't supposed to. That's a serious problem :( So, he sent us for a set of XRays, that thank GOD didn't show any unwelcome movements at this point, but she has a CT scan to confirm. He also sent us to the lab for blood work. He says he feels pretty sure she has arthritis (huh??) and she is scheduled to see a rheumatologist @ Children's day after tomorrow (CT same day).

Weird stuff. Weird, weird stuff.

Here is a little C1/C2/rheumatoid arthritis info

http://www.arthritis-treatment-and-r...neck-pain.html

http://www.neurosurgerytoday.org/wha...ervous_sys.asp

We're home!!

The surgery went GREAT! Absolutely no problems at all with her heart - thank GOD!!!

The surgery lasted just under 2 hrs, so not quite as long as the ENT anticipated.

However, when she got in she discovered the cyst was larger than we thought (about 2cmx3cm), so this resulted in a larger section of the hyoid bone being removed and she also had to core out a section of her thyroid and place a stitch at the base of her tongue.

They told us because of the cyst being larger and the space that was left, she'd be there until Sun afternoon. But, our strong willed daughter had other plans :) WE'RE HOME!!!!! She is doing AMAZING! We're all baffled by how well she did and is doing. I knew she was a tough cookie, but man!

We see the ENT in 2 wks to make sure the drainage hole has closed and healed and that her stitches are doing ok & everything looks good. No school all week, which she is VERY upset about about & no physical activity for 2wks.

She's up and around, eating pretty normal, talking pretty good. She's so amazing :adore We got to go home MUCH earlier than expected and I am so very thankful. I got the absolute best Mother's Day present ever!!

Here are some pics....

Us before surgery





@ Children's after getting the 'good stuff' w/ Tuffy the dog (TY Miss Nancy!!)



After in recovery...had her first popsicle!



This afternoon getting some fresh air in the Children's garden, while we waited for dad.

ok...

EESH! What a mess!! I finally got through to the Surgery Center and let them know what was going on - they called the cardio's office while on the phone with me and they had to eat their former words. How can you deny it when I'm there saying 'yeah, that's what you said' After circling their way out, they continued to say that the Holter really doesn't matter and she'll be ok to have the surgery. HOWEVER, since I am worried about it, they are putting a rush on the reading and we should have the results at 1pm tomorrow - one hour before her surgery. Cardio said that unless the heart block is WORSE, she will not cancel the surgery. They also called the anesthesiologist that will be taking care of Olivia tomorrow and explained the situation to him and he was very reassuring and said he'd take good care of her.

I feel a little bit better. A little. I still feel like I'm going to vomit.

You guys are awesome. TY for the words, the thoughts & prayers. I really DO appreciate them and they do mean alot to me. I know my first post may have come across really badly and sounded like I don't care to have the support, or I feel it's empty - I love feeling you all supporting us and I know you care. I'm just scared and frustrated. Keep uplifting Olivia for us - I'm so grateful for you all!

relax?

It's so easy to say 'relax', 'have faith', 'it will all be ok'. Easy words for me to say to myself. Easy words for others to say to me. Easy words. Easy to say, hard to believe and trust.

I was just starting to come to grips with this surgery. I was starting to feel peace, have faith. Now, I'm back to square one.

Turns out, all our rushing around and following dr's orders to get her clearance for surgery tomorrow was all for nothing.

Originally, Olivia was seeing an ENT in Springfield. When they scheduled her surgery they said we'd need clearance from her cardio. The cardio REFUSED! She said they only way she'd clear her was for the surgery to be at Children's in StL AND for her to have an acceptable reading from the Holter heart monitor.

So, we had our appt Tues. Got her put on the Holter, took it off of her a bit early yesterday, scheduled an 'extremely urgent' pick up from FedEx (per dr's request), got the monitor sent out, and it was received by the dr's office at 8:25 this morning! Plenty of time for them to get it and read the results.

This afternoon I get a call from the surgery center, giving me her surgery time and asking me to follow up with cardiology as that was all they were waiting on to make it final. I call the cardio and was told her nurse JUST faxed over a clearance for surgery. I asked if this meant the Holter reading was acceptable then and I STILL can't believe what I was told!!

The monitor apparently sat there all morning, so now at almost 2:30pm it's too late to get it entered in the computer and have the results read. They won't know the results until tomorrow afternoon. BUT, they cleared her for surgery any way! The whole reason this surgery was delayed and now, we have nothing. We were told they needed to know more info on her heart block so that the surgeon was prepared once she was under general. NOW, the cardio nurse says that the Holter was NEVER required for a surgical release, it was just something the cardio 'wanted to do'. Hmmm, yeah. Cover that butt just a little bit more.

I'm so frustrated. But, more than being frustrated I am terrified. I'm scared for my baby girl, but I can't let her see or know. I don't know HOW to believe it's going to be ok. I'm really trying, but I don't think anyone can understand. Knowing that your child is going into surgery (a surgery that HAS to be done) with a high risk of having complications from a heart condition and there is nothing you can do. I thought in the beginning, at least the surgeon would be prepared. They'd know exactly what they are facing with her heart block. I called the ENTs office and they received the clearance, so as far as they were concerned that meant the cardio read the Holter and everything was ok. NICE!

I don't know what to do. I don't know how to stop panicking.

UPDATE: While typing this the ENTs wonderful nurse returned my blubbering phone message. She spoke to the Surgery Center nurse, who pulled Livy's chart and told her the cardio's notes stated she'd never denied surgical release, that everything was fine & the Holter was unnecessary because Olivia was currently asymptomatic. I informed her that this was NOT the case AND informed her she IS symptomatic as she still wakes several times a night due to the block. So, she told me to call the Surgery Center and tell them exactly what I told her. I've been trying to do that, but for 10min now the phone has been busy. UGH!

If you've read this entire train wreck, you must REALLY love me! Bless your heart.

Trading my sorrows

I've had this song stuck in my head for days. Just wanted to share ;)

I'm trading my sorrow
I'm trading my shame
I'm laying it down for the joy of the Lord

I'm trading my sickness
I'm trading my pain
I'm laying it down for the joy of the Lord

Chorus:
And we say yes Lord yes Lord yes yes Lord
Yes Lord yes Lord yes yes Lord
Yes Lord yes Lord yes yes Lord Amen

I'm pressed but not crushed persecuted not abandoned
Struck down but not destroyed
I'm blessed beyond the curse for his promise will endure
And his joy's gonna be my strength

Though the sorrow may last for the night
His joy comes with the morning

Ky & Liv updates - appt, test results &surgery

What a crazy, busy day! We left for StL at 9am and got home just after 9pm. PHEW!!

Olivia saw the ENT @ Children's. They did another u/s to make sure there was no connected thyroid tissue and also did the TSH blood test. They confirmed what I originally suspected - it IS a thyroglossal duct cyst (same thing Sav had) and they want it out ASAP before it grows and/or becomes infected again. First avail date is this coming Fri. HOWEVER, before she can have surgery she was placed on the 24 hr holter heart monitor again. If they are satisfied with all test results, then surgery is a go on Fri. Because of her heart issues and all, it went from being an outpatient surgery, to an inpatient surgery. Keep those prayers coming!!

We also got Ky's 2nd MRI results from Sat. The neuro was right on with what she thought was going on. Her concussion caused some blockage of her cerebral fluid flow. It's not a TOTAL blockage (which is why the headaches are worse at times, and non-existent at others. She has referred her to a neuro surgeon (we see him this coming Mon) They talked briefly on the ph and surgery and diff meds were discussed. Ped neuro thinks he is going to want to try Topamax first, before we go the surgical route. We'll discuss it all on Mon.

TY all for your never ending love and support.

tomorrow

Ky goes to StL tomorrow for her follow-up MRI. Thanks SO much to those of you that have sent cards, thoughts & prayers. We are SO very thankful for all of you. It's been a true blessing having ppl to lean on and draw strength from.