I need a distraction...

for a couple of reasons.

#1 My allergies just all at once flared up and I can't breathe and it feels like my face, my eyes, my nose, my ears are all ten sizes too big :ugh I am miserable. /whine

#2 I know it's insane :uh :lol but, by this point, I at least had a couple of contenders for names picked out and I haven't even thought about it. I've been all pessimistic and pushed everything to the back-burner, but now it's time to start thinking positively and planning.

So, that's where you all come in :giggle :adore

Throw some name suggestions out there! :cheer :blue

We're a bit pickier with girls' names :uh We'd like a name that 'goes' with the other girls' names (Ariana, Savannah, Olivia, Kyra & Emma) and either ends in an a or the 'uh' sound. We'd also prefer the name to be an object, though it can be spelled diff (Jade, Rose, Paige, Skye, Dawn)

Boys' names - we're not so picky. Both the boys' names are family names, so we may or may not stick to that trend. :dunno

Anyone??? :help

Poor Kyra

At her last appt with the neuro surgeon at Children's in August, he told us we could slowly start weaning her out of the collar and to call if she had any problems.

I had to call her neuro surgeon. She has to go back to wearing the collar 24/7 again :(

We'd gotten her to the point she was out of it from about 3pm-7:30am, but she started having bad headaches in the evening. The first couple of nights I hoped it was just a fluke, but last night she asked if we could put the collar back on so her head would stop hurting :(

So, we're starting over again. He wants her in it 24/7 for 2wks and then we'll start all over again with the gradual weaning and hope next time goes better.

I wish her appt would hurry up and get here, so we knew what the mass was doing. She goes back for another MRI at the end of Oct.

Nerve-wracking

That's how my ob appt yesterday felt. The nurse did the usual stuff and then a male med student came in and asked if he could talk to me and listen to the heartbeat. Sure.

He kept trying to find it, but couldn't :( My heart sank! He looked up at me and said 'I'm sorry! I really hate when this happens, but I need to go get Dr. C'

It was only a couple of minutes until he returned with her, but it felt like FOREVER!! Dr. C started looking for the hb, and after a couple of minutes she looked at the med student and said 'I can't get it either! Bet you don't feel so bad now!' And they both laugh. I was like HELLO!!! I said, 'Well, it doesn't make me feel better!' She said, 'I'm sorry. I could keep looking and prob find it, but I'm stressing you out, and that's not good (ya think?!?) so let's just go next door and do a quick scan.'

I just KNEW in my heart it was over. I was fighting back the tears and wishing Kevin was with me.She put the wand on my tummy and started laughing and moved the screen so I could see. She said 'Well, obviously everything is ok cause he's moving around all over the place' Little stinker! He/she was SO active and moving around like crazy! Found out the reason they couldn't pick up the h/b was because of the placenta being anterior. She zoomed in a bit and showed the heart beat (didn't get a h/r) and printed me a pic and sent me on my way.

I'm thinking after nearly giving me a heart attack, he/she deserves his/her first spanking when they're born! LOL.

I still don't think it's sunk in yet. I've just been expecting the worse, with all the cramping/spotting and 3 AIPD outbreaks, but it's really looking like peanut is gonna be just fine!

Here is the pic from yesterday

Here we 'grow' again......

http://www.babiesonline.com/babies/g/goddardbaby8/

Update

I thought I'd updated, but obviously didn't.

Ky's last appt went well. The neuro surgeon showed us her latest scans in addition to previous scans and the mass is shrinking so it's definitely NOT a tumor/cancer! Thank GOD!!! We still don't know what it is, or if it'll totally resolve on it's own. The only way to know for sure is to do a biopsy and that just seems to invasive at this point. She's still wearing the collar, at least til next mth.

Olivia is healing very well from her surgery.

Kyra's new collar & a couple of H

You can tell by the pictures how one of her shoulders is lower than the other & how crooked her neck still is :sigh







And, this is H lovin Momma's MP3 player during our long ride :giggle

Cervical Collar for Ky

Talked to the PA at the PNS' office, they want her fitted for a cervical collar. They are hoping this will provide stability and help avoid any spinal cord compression.

She has a field trip in StL tomorrow, so we will go to the ortho then and have it taken care of. Unfortunately, this means she'll miss her field trip but it can't be helped.

another update on KY

Finally heard back from the PNS' office. He wants to see her to check on the mass and see if it's grown. The first available appt they had to get her in for all of her testing - MRI, Xray, etc. is July 8th in the evening, and then we'll see the PNS the next morning so he'll have her results.

We're trying to think positively and hope for the best, which would be that the mass hasn't grown and turns out to be benign. At any rate, it sounds like it's going to have to be removed since it's against her spine and now causing more problems - but that is much better than the alternatives.

She had to go to the nurse today and cried off and on all evening about her neck hurting. Hoping she can hang in there until the 8th!

Kyra

Basically, after Ky's last appt with the ped. neuro surg. we were told to look for additional symptoms that might mean the mass against Ky's cervical spine was enlarging and/or causing problems.

At the end of last week, she came home from school one afternoon and said she didn't feel well and asked to lay on my bed. She went to sleep about 4pm and we were unable to wake her for dinner. When Kev picked her up and carried her to her bed late that night, she still didn't wake and she slept through the night until 6:30 the next morning. We didn't think much of it then, just figured school had worn her out, she was coming down with something, etc.

Yesterday she came home from school and started holding her neck and crying and saying it hurt. I waited a little bit and then decided to call the PNS (ped neurosurgeon) - got the after hours answering machine even though it was 15min before closing I left them a message and told them what was going on. She whined off and on and played just a little. At dinner she would only eat a couple of bites of mac n cheese (which is unusual for her) and then wanted to lay on my bed, she went right to sleep and slept for several hours but then was up off and on all night last night complaining of her neck hurting

We're just worried about WHAT this soft tissue mass is and her new symptoms. They told us at her last appt that it was pressing up against her spine, but there was no compression yet but she was not to do certain movements and exercises that might cause that to happen.

So, yeah, I'm just a little worried right now.

I did call back again this morning and was told PNS is in surgery all morning, but I will get a call back this afternoon.

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.

Another update on Olivia

I just call a call from Children's in St Louis. The soonest an ENT there can get her in is next Tues, May 6th. They said they are fine with her waiting that long to be seen and we should just keep an eye on her and take her to the ER if she starts having breathing problems (nice!) Her appt will be a consultation, NOT surgery. They will schedule surgery after her appt that day. Also, after her appt she has to see the cardio again for repeat Holter monitoring.

Field Trip

Friday was the twins field trip to Springfield and, thanks to Kevin, I was fortunate enough to go with them. It was a BLAST & we had such a great time. It was so nice spending one on one time with Kyra and Emma.

We started our day off at the Dickerson Park Zoo & had a sack lunch when we were done. Then, we were off to the Discovery Center and from there we went to Incredible Pizza for dinner & games.

A few pics of our day :)

The bus ride....

BEST FRIENDS :)





At the zoo









Discovery Center



We need one of these at our house!!!









Their favorite thing @ Incredible Pizza

another bump

Poor Miss Kyra. She took another knock to the head last night :( I should've known better than to get Miss Accident-Prone a pair of flip flops, but there ya go. We got home last night and she got tripped up, fell and hit the corner of our old entertainment center (now being used to house toys)

We called the on-call neurologist at Children's in St Louis and she said as long as she was acting like herself and pupils were dilating, she didn't recc a trip to the ER as they might want to do a CT and the risk of radiation are higher than what we might learn, esp since she's scheduled for a 2nd MRI this coming Saturday.

A pic of our little bruiser....

this crazy roller coaster

This crazy roller coaster ride we're on just keeps presenting us with new twists and turns.

When Kev took Livy to the ENT, he forgot to mention her heart problems. SO, when the ENTs office called me to set up surgery, I made sure they were aware of what was going on. They called me back and said before DrH would perform the surgery, we'd need to have Livy's cardio fax a release for surgery to them.

I called the cardio and was told someone would call me back. Several hours went by with no call, so I phoned them. I was told by her nurse that the cardio was reluctant to sign such a release, but wouldn't tell me why. She told me she'd continue to 'work on it' but couldn't promise me a release would be sent.

I called a couple of times yesterday (from my field trip with Ky & Em) and was FINALLY given some information. Apparently, they pulled her chart to give to the cardio for her to review, so she could send the release. In reviewing it, and then asking another specialist to look it over, they came to the conclusion that she's not to have surgery.

For those that don't know/remember Olivia has an intermittent heart block at night. What this means is when she falls into a deep sleep her heart stops working (kind of like sleep apnea) and only when she wakes up (which she does SEVERAL times a night) does her heart return to normal. Obviously, under general anesthesia, she won't have the luxury of waking up when she falls into the heart block.

We were told that specialist, as well as an ENT at Children's in St Louis is reviewing all of her current info (everything from ped, cardio, ENT, etc.) and if they agree the cyst needs to come out, they will only give the OK for a surgeon at Children's to perform the surgery as they're better equipped for what will (not might) happen.

I'm stressed. To. the. max. This was a HUGE concern of mine all along...what happens when she doesn't wake up? Her cardio acted like no big deal, see ya next year, go on with life as normal. Obviously, that's not the case. I just thank God that she hadn't had an emergency before all this came up and I am SO glad I knew that I needed to give them this information.

Please pray for Livy. We don't know what's going to happen. The specialist finally received all of her info right before closing yesterday, so we won't talk to them again until Monday.

now for a Livy update - surgery

Olivia is having surgery to remove the cyst in her throat on Monday, Apr 28. The ENT is not convinced that it *is* a thyroglossal duct cyst. He says it appears to be a bit low to be that. Whatever/wherever the cyst is, it needs to be removed & biopsied.

a little sunshine

So, I had to share a little sunshine in the midst of the rain :)

It's nothing big, but something that made me happy and appreciative nonetheless.

When the kids & I got home last night, Kevin told me that he was going to take off work Fri and stay home with the boys, so that I could go with Kyra & Emma on their field trip!!! He knew how badly I wanted to go and I'd already told the girls I was going before their teacher asked siblings not to attend. I didn't have anyone to watch the boys, so I wasn't going to be able to go. I love him so much. I know it seems like such a small thing, but it's a really big thing to me.

I love you, honey!

2nd MRI

is scheduled for May 3rd.

results are in...

Good news is that there are no tumors or growths. Bad news is that we all have cerebral fluid surrounding our brain. Well, a portion of Kyra's has been blocked off (most likely caused by the damage done by her fall/concussion in Zuni - which is also when the headaches started - they've just gotten worse and more frequent) The blockage is stopping the fluid from flowing freely and is causing pressure which is causing the migraines.

She is having another MRI that will just check the fluid flow to confirm the diagnosis and we'll go from there, but we're looking at surgery.

I'm drained. To the point I almost feel emotionless. Your thoughts and prayers have meant alot.

still waiting

Just wanted to update you all, as some of you have checked in and are waiting with us (thank you, btw)

Unfortunately, we don't have the results yet. I just called back to leave my cell ph # as a call back since I'm getting ready to take the girls to soccer (it's 20min til 2) and I was told that as of 11:50 the MRI hasn't even been read by the radiologist!!

While I'm frustrated, it does make me feel better about earlier since the dr obviously wasn't going to call with bad news because there was no news to give.

Just waiting......

Deep breaths

I called the ped neuro's office this morning to get Ky's MRI results. I was told by the nurse that our dr would have to call me back. I keep telling myself that it's normal, standard procedure. Hoping to hear soon....

Rain

You know the saying 'when it rains, it pours?' Well, we're feeling quite flooded.

It's been a crazy couple of mths around here! We've been busy with school stuff, volleyball, soccer & a bunch of health issues.

In January, Olivia passed out at school and had some heart testing done ordered by her ped cardio. We're keeping an eye on her and having a re-eval next year.

Kyra has been having migraines for awhile, but they've increased in intensity and frequency so she saw a ped neuro at Children's in St Louis. She's currently on migraine meds (Propranolol and Imitrex) and has an MRI scheduled for April 19th. (Had her MRI - get the results on the 21st. Meds not working, dosage was doubled)

Olivia lost her first tooth. Brent got stitches.

Yeah. We're ready for a break.

HOWEVER, we saw several little in-patient children while we were at Children's Hospital that reminded me even with what we have going on we are SO incredibly lucky.

Kyra

We'd appreciate P&PT for her please. She'll be having an MRI at Children's Hospital and an appt with the ped neuro.

Who's the prettiest?

Last night when we went to have our pictures taken, the photographer was SUPER nice and he's getting to know all the kids beforehand. He's asking them questions like what they did at school, how old they are, who's the oldest, who's the smartest, but the killer was....

"Which one of you is the prettiest?"

EVERY. SINGLE. ONE. OF. THE. GIRLS. points to....

BRENT!!!!

Priceless.

I will beat you with my stick!

I was doing the dishes when B came up to me and said "Mommy, say 'Little pig, little pig, let me in' to me"

Me: "Little Pig, little pig let me in!"

B: "Not by my hair not by my chin!"

Me: "Then, I'll huff & I'll puff and I'll BLOW your house in!"

B: *hands on hips* "Uh, no you won't! My house is made of sticks!"

Me: "Yes! Then, I will blow your house in!"

B: "No you won't 'cause I will beat you with my stick!"

Ohhhhhhh boy!

"I will beat you with my stick!"

I was doing the dishes when B came up to me and said "Mommy, say 'Little pig, little pig, let me in' to me"

Me: "Little Pig, little pig let me in!"

B: "Not by my hair not by my chin!"

Me: "Then, I'll huff & I'll puff and I'll BLOW your house in!"

B: :eyebrows raised *hands on hips* "Uh, no you won't! My house is made of sticks!"

Me: :lol "Yes! Then, I will blow your house in!"

B: "No you won't 'cause I will beat you with my stick!"



Ohhhhhh boy!!!!!!

Wherefore Art Thou, O Spring??

Anyone that lives in the mid-west will understand where I'm coming from. I am done and over winter and so ready for spring!

We've had a crazy week! No school, lots and lots of ice and one thing after another.

Since Olivia has been on her new monitor we've called in, I believe, 6 episodes and my hair is turning gray!

We attempted to get the van out of our icy slope of a driveway on Friday in hopes of getting our taxes done and we ended up stuck in the yard where it will most likely reside until spring.

We ran out of propane and said icy slope made it impossible for the propane truck to get to us, so Kev headed to town in the truck to get a 100lb bottle in hopes of getting us through until the truck CAN get to us.

The hot water heater quit on us, but we are so thankful to our landlords who rushed out ASAP to fix it for us.

I feel like a big complainer, but really despite this challenging week, I truly am very thankful. I'm thankful for all that we have and thankful that things are as good as they are.

update on olivia

Just got home (around 8pm)...what a long & exhausting day.

We got there and they did another EKG and rhythm strip....both looked fine.

The ped cardio came in and discussed the holter monitor results with us. She disagreed with what we were originally told. She didn't feel that the arrhythmias that were picked up in the beginning were of real concern...she said the real concern was what showed up while she was sleeping. THIS is where the 'heart block' comes into play. She showed us the strip and I couldn't believe the difference in the readings. At night her heart rate is slowing down way too much and is occasionally missing beats, etc. It looked so weird. She said the good thing is you can tell when she was restless or awake, because things would go back to normal :uh Ok, I'm still freaked out. I really think this is why she's so restless at night and wakes so frequently, but the cardio seemed unsure about the connection :dunno

She said she has no idea what is causing the heart block and that it's very rare in the way it's happening with her. She doesn't feel the passing out was related to this in any way. She agreed with the first dr that it was her innocent heart murmur and her body being weakened by the virus she already had :uh Again, no reassurance to me as we've been told it could certainly happen again the next time she gets ill.

She said at this point the only thing she thought we could/should do is to place her on a 30 day event monitor. Depending on what that shows, she'll order further testing or see her 1-2 times a year for a repeat holter reading just to make sure nothing has changed or nothing new has developed.

Thanks to everyone for the P&PT :hug :adore

big day tomorrow

I'm so exhausted and can barely keep my eyes open, but yet I can't sleep. I'm a nervous wreck about tomorrow.

We'll leave for Childrens Hospital in StL around 6 am and if you have any good thoughts to send our way, I'd appreciate it.

AIPD

I thought I'd try to explain a bit better, since I've gotten some questions as to what is going on.

What I have is AIPD (auto-immune progesterone dermatitis) it is hormone-induced dermatoses. People handle it differently, but for me what it means is that I'm producing higher levels of progesterone and my body is reacting adversely to it. My prog peaks the week before my period and that's when my symptoms worsen. I get migraines, feel really fatigued and achy, I get a bad rash, etc. It's certainly tolerable, but still not fun.

WARNING - a downer

I feel like such a downer lately, posting all bad stuff, but this place is like my refuge and it's nice just being able to type it out.

I was reading through the paper work the dr sent home with me yesterday re: the auto-immune thing. 'an outbreak early in pregnancy has been associated with miscarriage' *cry*

I don't even have the words for all the thoughts and feelings going through my mind last night. It was almost a relief of sorts to have a 'why' for losing Ava, but at the same time it hurts.

Overwhelming day

It's been a long, overwhelming day. We left for Springfield around 7:30 this morning and haven't been home long (it's 10pm)

Sav went to the derm to have planters warts removed and I saw the derm for my chronic skin stuff and other symptoms (since July 05) Sav did great and has a followup in a mth. I found out I have some sort of auto-immune thing where apparently my body is producing too much progesterone AND my body is 'allergic' to it. He said that's the best way to describe it. My only options are to treat the symptoms by receiving strong antihistamine & steroid shots (which I don't want to do unless necessary) OR have my ovaries removed or go on the strongest birth control pill (can't do because of breastfeeding). So, at this point, it's try to put up with the skin stuff and the migraines unless they get worse and then we pursue other options.

We got a call shortly after arriving home from Olivia's dr. The holter heart monitor did pick up more arrhythmias, but they thought it was a good sign that she didn't pass out again. So for now, we're just to keep an eye on her- she can go to school, but no gym or recess and someone is to be with her at all times. She sees the ped cardio at Childrens Hospital in St Louis on Feb 13th.

I need to go to bed.......

How do I do it?

I can't even tell you how many times over the past several years I've been asked the question "How do you do it?"

How do I do what, you wonder? Raise seven children, of course.

Every time we're asked that question it never fails to make me look at my husband and chuckle. It just seems like such a silly thing, to be questioned about something you give absolutely no thought to.

Oh, and if you're wondering about the answer to that question, my response is always the same... "We just do!"

We get lots of complements on how well behaved they are or what a good job we're doing and I'm sure there are just as many times that people are rolling their eyes and whispering to each other about how crazy we are and what a mess we're making of things. And, you know what? It's all good :) No one is perfect and we certainly don't claim to be. We're like every other parent out there struggling to do the very best we can, hoping that we're making the right decisions and leading our children down the correct paths.

If I sit down and REALLY think about 'how' we do it, I could type a novel (hey, maybe I should!). The key to making it all work is my amazing husband, Kevin (and no, I'm not just saying that because he reads my blog). I am truly blessed. Sure there are days when I give him 'the look' and there are times I just shake my head and mutter under my breath and even times the poor man just has to sit back and take all the ranting and raving my lungs can muster. But, more often than not, I just look at him and thank God for giving me such a wonderful man. There are days I'm truly in awe of all he does and how he manages it all. He can put in a long day at work and still come home and fill any request I might have (well, most of the time LOL) I tell you, this man deserves way more credit than he gets. I know a lot of our friends and family see it, but strangers always sound off with praises of me. Little do they know there is NO way that I could do it without him. I love you, honey.

Then, there are the children. They are seriously seven of the best kids you will ever meet. Yes, they too have their moments but they really do make it easy. We've been blessed with very independent children (I can't believe I'm saying that because it's so frustrating at times) We have the normal sibling stuff, but they all get along very well. Everyone loves to help out and it's usually a race to see WHO is going to get to help. Some days I'm just amazed that God has entrusted us with these precious little people. They are such a joy.

For things to go smoothly, you really have to be an organized person. As much as I like to be organized and for things to be 'just so' sometimes it just isn't possible with a large family, so you learn to let some things slide.

Just to give you an idea of some of the things I do to help things run smoothly. Every evening I lay out the kids clothes for the next day. They know when they wake up in the morning that their clothes are in the living room in order from Ariana on down. We have charts, calendars, and bulletin boards galore. Those really help! The toy area has actually been staying very organized. Everyone, except H, has finally grasped the concept of things belonging in a certain place (labeled toy bins are your best friend) and clean up every day USUALLY goes pretty well.

Speaking of toys, my best friend got cracked up at me a couple of weeks ago when she overheard me talking to the kids while we were on the phone. I had to explain to her what exactly I meant by Kyra's 'stick' was in the wrong place and that's not what she had 'checked out' All of the girls' had gotten GameBoys (birthdays & Christmas) and with them come lots of little games....games times 5. So, while shopping at WalMart one day I came up with a genius idea. I'd seen those over the door car (HotWheels) holders. PERFECT!! I snatched one of those suckers up, brought it home and Kevin made labels for each pocket. The labels told the name of the game and stuck inside the see through pocket. I got colored popsicle sticks and wrote the girls' names on them and VOILA! We had a 'check out' system for GameBoy games! Goodbye games all over the house! Goodbye turning the house upside down for 2hrs Christmas morning looking for BRAND NEW games we thought must've been thrown in the trash. HELLO sanity!

Yep, we're a little nutty, but all in all I think we're a pretty cool family :)

Truly pathetic

Yes, it's February 2008 and I've made no effort whatsoever to keep up with my blog. The majority of the time I just feel like I don't have anything interesting enough to say....I should work on that.

In the meantime, if you have prayers to spare, please remember my daughter Olivia.