sick mom, sick kids

It really really sucks to be sick. It sucks that there's two sick momma's and at least 5 sick kids in this house right now. 2 of the boys and 3 of the girls are sick.

The reasons this sucks big time is that well, for one thing, being sick just blows, but I don't feel like I can momma my babies as well because I don't feel so good.

Peanut is at HIGH risk of having an attack right now. She has only been on the Flovent a week really. I already see some retractions and I heard some bad bubble sounds on one side this morning with the stethoscope. And then later I could hear some wheezing when she was on my lap. She is in good spirits though. So for now I am watching her. I want to avoid the steroids as long as possible, but without getting her too sick.

One of the other reasons this sucks is that Adventurer induction was today. The girls would have worn their adventurer uniforms for the very first time today. I was looking forward to seeing them standing in front of the church being inducted. But we couldn't take them, we couldn't get the entire church sick for our selfish desires. BFF's DS2 was the only child truly healthy enough to go to church so BFF's DH took their DS2 to represent our entire household. *sniff* It is what it is right?

Read more...

Is it wrong of me?

Is it somehow wrong of me that I don't want to be part of a group of other parents who's kids have epilepsy?

I just don't know that I am ready to go there... Maybe in time.

Read more...

Next stop: Cardiologist

Brief blog...

So as part of the drama of getting Bug cleared for her MRI the nurses clearing her for sedation asked about her on again off again heart murmur which they had incorrectly been told was gone. I clarified that it was in fact there. They said they'd need a clearance from her doctor for her to undergo sedation for the MRI.

I decided that we needed to have a second look at said murmur so I called the pediatrician (by this point I've also changed the girls Primary Care to the pediatrician that saw Bug at the start of all this because I really liked her.) and she saw Bug Wednesday evening.

First off, I LOVE that this practice has LATE appointments. They saw her at 5:30 PM. THANK YOU.

But I really appreciated the doctor. She listed to everything I had to say about that this has been an on again off again murmur for 2 years and no one has ever taken a closer look. I was FINE with "I think it's nothing" when we were talking about a normal, healthy child. But Bug has epilepsy, and her heart races during her seizures, and she now needs to be sedated for an MRI. I'd like to be SURE.

She ASKED Bug, do you want to sit on Mommy's lap or on the table, she gave my daughter CHOICES. THANK YOU.

And then after listening to her heart for quite a while in various places, she said... I honestly believe it is nothing to worry about, it is a typical murmur we see in growing children. She is a thin child with a thin chest wall which makes it easier to hear. But I believe that it is NOTHING to worry about. HOWEVER, I am NOT a cardiologist and you are right that she has a lot more going on than a normal child, so I really think we'd be better off getting the cardiologist's blessing on this one rather than mine.

THANK YOU DOCTOR!!!!! Thank you for not having the I am always right complex!

She then confirmed with me that all of Bug's specialists to date have been at Children's Hospital and referred us to pediatric cardiology at Children's.

I still need to call and make the appointment. But I really appreciated that she listened and totally agreed that this isn't a normal situation and let's just BE SURE in this case. THAT is why I made her my daughter's PCP!!! :)

Happy doctor's appointment!!

Read more...

Needed a break

Hi to all my bloggy readers.

I promise I didn't forget about any of you. I just had to take a bit of a break. I felt like my whole like had been on a roller coaster lately and I really needed to apply the brakes and slow it all down as much as possible. I needed to concentrate on my little girls in a HAPPY and HEALTHY way (in other words on THEM, not their illnesses). And I needed to concentrate on ME too.

Here's the brief rundown of my past week:

Monday, October 19th: Bug got her EEG removed, JOY!!!! I worked a 6 hour shift at work! :)

Tuesday, October 20th: We dropped off Bug's prescription which would need to be special ordered and we went to pick up Peanut and Duck's glasses. Duck had been so excited but then seemed almost unhappy about them. Peanut who had been a little more indifferent about them all along was still a little more indifferent but has accepted and tolerated her glasses better. Then I worked a 6 hour shift.

Wednesday, October 21st: I left for work for a 6 hour shift and BFF and the kids dropped off her DH at the airport for an overnight trip for work. That night I got angry, and I don't even remember what caused the anger, and barreled down the hallway in the dark and kicked a crate I didn't know was there. I apparently nearly removed the toenail from the big toe. I didn't realize this though at first. It took a few minutes til I looked down and saw copious amounts of blood on the comforter on the ground (at least it wasn't the carpet). Finally I accepted what had happened and BFF and I got me patched up and I took something for the then THROBBING pain.

Thursday, October 22nd: Foot in INTENSE pain, realize I cannot put MOST of the shoes I own on, including my Uggs. Or work shoes... Thank goodness I didn't have to go to work. But I could wear my crocs. I had to take Peanut to the doctor. I got her seat moved into the Sports car and off we went. She was seeing the Pulmonologist about her Respiratory Airway Disease. RAD is a catch all term for asthma like condition that isn't really asthma. In Peanut's case, when she gets sick, such as a cold, it gets BAD, she wheezes, til she can't really breathe and I end up giving her albuterol treatments. So anyway. The appointment went very well. She was extremely healthy this week which was actually a good thing. because we were able to get a good baseline HEALTHY chest x-ray, so if she does get sick there's something to compare it too. The doctor said if you tried to tell him this child was healthy he would tell you that you were CRAZY, but that if you told him this child was an RAD child he'd tell you this was a perfectly normal, healthy x-ray.

We discussed medication. He is happy with Albuterol for abortive treatments, as we have been doing. He and I discussed how many times she's been on oral steroids (fortunately not too many times, I am EXTREMELY opposed to having her on steroids if I can avoid it, as I worry about what they are doing to her, but I do see the need sometimes.) He suggested putting her on a daily inhaled steroid for maintenance. In many ways this goes against EVERYTHING for me. Because I HATE having my child on steroids. BUT... he and I had quite a lively discussion about it. It went something like this...

Albuterol is a steroid too. But I am totally willing to use it because bluntly if she's having an attack I HAVE to stop it. So... if she has a cold and it lasts, lets say 5 days, that's a good average for her, and I have to give her 3 treatments a day, that's 15 treatments per cold. Now then, if she has 2 colds per month, again, about average for her, she is receiving about 30 doses of the steroid in albuterol. Now then... the point of the maintenance medication is to hopefully keep her from needing as many if any treatments of albuterol when she gets sick.

So... if she gets one dose daily of the maintenance med (approx 30 doses per month), vs. 30 or more doses of albuterol in a month... well, she's getting the same, if not LESS steroid in a month... LOL At least that's the theory. So in the end I agreed that she was probably better off on the maintenance med, so we discussed which one and put her onto Flovent for the winter.

Come spring if she has had a good winter we will discuss other possibilities, such as allergy testing. Her environment from last winter to this winter has changed dramatically so I am concerned that she is possibly allergic to things that were present before and are not now. If that is true I want to know so we can avoid putting those things BACK into her environment!

The rest of Thursday was a kick back enjoy ourselves kind of day until late late late when we all went to the airport to pick up BFF's DH.

Friday, October 23rd: Despite an extremely late night for everyone we had an early morning as BFF, her DH and their DS3 has to get up pretty early for a doctor's appointment for DS3 in Boston. They were under the impression that it would be just a shorter morning appointment, but it ended up being 2 appointments and they were gone all morning. The kids at home were pretty good for me overall though and I suggested we take them all out for a treat! We dropped BFF's DH at work and went to Target to pick up a few things and the kids were totally different. They had been GREAT for me at home but then they weren't at the store. *sigh* Oh well.

Saturday, October 24th: Blessed Sabbath: Raining like cats and dogs. We headed off to church and enjoyed a wonderful Sabbath. It was nice. BFF and I spent part of he afternoon with a friend for her birthday. And then we took the kids to a birthday party that evening that evening for a little boy from church (after sundown). It was great fun. It was a bounce house facility. ALL the kids had a blast! :)

Sunday, October, 25th: We went to Tougas Farms to pick apples. We went with the Framingham Centre Church Adventurer Group, but our Twin Club was there as well. :) We primarily stuck to the Adventurer's as BFF and I are Little Lambs Leaders and 6 of our 7 kids are in Adventurer's. Plus, the Adventurer's were actually going apple picking as a group, the twin club wasn't. After the apple picking we did "make an appearance" at the twin club area and sign in. All the kids had a fun time. BFF's mom arrived in the evening.

Monday, October 26th: We had a fairly un productive morning in some aspects. LOL we got some stuff done but overall we did very little LOL BFF's mom left for NYC for work about half an hour before I left for work. I worked my shift, my toe hurt pretty good, but I made it through.

Today: I have phone calls to make and errands to run, then a 6 hour shift to work. Hopefully my toe will hurt less today. One can only hope right?

So that is my week (plus) :)

Read more...

The EEG is off!!!

We went this morning nice and early and got Bug's EEG off. It's nice to see her running around with her hair out just like the other kids again. I hope the doctor's got some good results from the EEG and it helps in her treatment.

Read more...

Migraines, Sports Cars, Seminar

BFF and I both awoke with pounding migraines this morning. I brought her meds but then was crying to hard to go back and get my own. She tried a foot massage/reflexology on me which reduced my headache enough to get the meds, but it never fully went away. Her's NEVER really went away, and she slammed it with all her meds. And she HATES meds.

Her DH had a headache too, which really inclines me to believe that weather played a role in it.

Needless to say, we missed church. :( But NOTHING was keeping us from Seminar tonight! We did make it and I was glad, it was VERY interesting learning about prophecies from Daniel and Revelation.

BFF's brother's car arrived today. He had it shipped to her from across the country. I had honestly never considered having a car shipped, figured the cost would be outrageous. But after hearing what he paid, I may end up just paying to have my car shipped here when I get it from my ex. When it is paid off I get the car and I am responsible for getting it. Well, it may cost me less to SHIP IT than to take 3-5 days off work, fly down there, pay for the gas, food, and hotel to drive it back here. UGH. Pay someone to do what I don't want to, and I keep working those days! LOL

Anyway, I really could have cared less about this car. The plan has been for BFF's DH to use it as his car is really not in the greatest shape and her brother's car gets better gas mileage. The benefit to me is that I would basically "inherit" her DH's car. My drive to work is only 6 miles so the not as good condition of the car is a lesser concern for me. Especially since I should have MY car sometime in the next 6 months.

BUT... then BFF tells me, "I think that it's a stick shift." WOAH... STOP THE PRESSES... did you just say stick shift??? I LOVE stick shift cars. Learned to drive in one, only drove sticks until I finally got the car my ex currently is in possession of. We confirmed with her DH who was at the car at that moment and I suddenly wanted to go for a drive!

Finally a few hours later we had reason to go. I have not driven a stick shift car since April of 2004. Yet I got behind the wheel and was able to not grind a single gear or stall out even ONE TIME all day or night!!!!! I LOVE THAT CAR!!! :) :) :)

Seriously... BFF's DH might have to fight me for it. LOL

BTW, mom and dad if you're reading this blog, lemme just thank you again for teaching me to drive a standard!!!!! :) :) :) :) I LOVE ME MY STICK SHIFT CARS!!!

Read more...

EEG, Prophecy Seminar and Blanket Cutting

Well, yesterday was a BUSYYYYYYYYYY day for our "family" :) But one that in the end brought great joy to us I believe.

I had to work fairly early, as did BFF's DH. He woke me up fairly early to tell me it was SNOWING! Yes, October 16th folks. We had snow falling on OCTOBER SIXTEENTH!!!

Fortunately it didn't stick to the ground but still.

Work was busy, but relatively decent.

Bug and BFF went to get Bug hooked up for her 48 hour ambulatory EEG. She is hooked up to EEG monitoring all weekend long. The wires are literally glued to her head and then a stocking cap is taped to her head and it trails to her little giraffe backpack (she got to pick out the animal). The stocking protects the wires. Inside the backpack is the machine that houses the monitor. We basically do nothing other than make sure she doesn't smack it around too much or take wires off, unless we see her having a seizure. If she's having a seizure we are supposed to press the button on the monitor and record why we pressed it on her log. So far we've pressed the button once. I feel in my gut she's having more seizures than this. But today was a bad day for me and BFF as we both woke with migraines. The girls were being watched by BFF's DH mostly. Oh well. If she has them, they will catch them anyway.

Bug is handling the equipment very well, but it will still be a welcome relief to me to see if all taken off on Monday.

Last night was the first night of our church's Prophecy Seminar. It will run for a few weeks and is five nights a week. I believe I'll be able to make it at least 4 out of the 5 nights a week. I'm really excited for it. I previously felt I couldn't attend any of the series like this because of work. but this time I can. And they are running a children's program too.

After Seminar, BFF and I went to a fellow twin mom's home to assist with the prep work for the twin club's philanthropic project, making fleece tie blankets for the local NICU's. We helped match, trim, and pre-cut the blankets, so that at our next general meeting the members can tie them. Lots of fun for a small group of us. :)

It was a BUSY and late night. But very fulfilling day!

Read more...

Score one for the team

Yesterday was Bug's hearing test.

One of three things happened.

1. My daughter has perfect hearing but got too tired to finish the test (this is what the audiologist believes happened).
2. My daughter has mild hearing loss in one mid range and it was toward the end of the test making it difficult to tell if she was just too tired to finish or wasn't hearing the tones.
3. My daughter couldn't hear much of anything but likes to make people happy and played the games to get the reaction anyway.

Anyway... As I stated above, the audiologist believes she hears quite well but was tiring out and was just not playing the games anymore. She wants to see Bug again in 6 months to repeat the test and said they would begin with the range they ended with and were unable to fully ascertain her hearing ability in. However, if I felt uncomfortable with that I am welcome to have her come back in less time for a repeat exam and we could start with the mid-range she failed yesterday.

BFF is the one who pointed out possibility number 3. Bug is a girl who likes to make us happy. If she believes putting the fishy in the bowl will give the reaction she'll do it. So it's a slim possibility that she really was just playing along. I may need to discuss this with the audiologist, see if she has a method of testing without giving Bug a reaction. I will get her email with the report in about 3 weeks. So I guess I will ask then.

Overall though, I tend to agree that for the most part her hearing is probably okay. Her speech is garbled though. The audiologist advised me to have her evaluated by the local school district for possible speech therapy services. I had to have speech therapy in the second grade. So I know it wouldn't be the end of the world.

I'm not sure I'm totally comfortable though with moving her into the public school system though. I never have intended to put my daughters in school. Before I even got pregnant I intended to homeschool my children. I am a firm believer in homeschooling. And to tell you the truth, I am scared that by putting our names "into the system" it puts a target on our backs early. Especially because of the fact that putting her in now for special services shows that she needs help and may make the school district(s) more resistant to me homeschooling her down the road if we remain in the area. Flying UNDER the radar is so much more preferable. But I can't let her speech suffer either. I'm confused as to what the better choice is.

In a way, being told she had a mild hearing loss might have almost been a better answer, because if a hearing aid would have helped and we could have avoided speech therapy, we could avoid the school system. *sigh* I don't know what to feel.

Read more...

Another stressful day.

Today was the day the girls had their appointments at ophthalmology. Both were being seen for possible lazy eye though really Bug's was just a precaution. It was very unlikely she had it. The good news is, she was given a "clean" bill of eye health with nearly perfect vision in both eyes.

The BAD news is that Peanut was given a very very different outcome. She has lazy eye, much worse than I had thought. It is in BOTH eyes, and needs correction quickly. It is very pronounced. Her vision itself is not overly bad... yet. Though one of her eyes is nearly as bad as one of mine!!! The doctor gave me a prescription for glasses. The hope is that the glasses will correct the lazy eye(s) sufficiently that minimal further treatment is required. She will go back in 2 months to be seen again and see how she is doing with the glasses. If the glasses are not helping the next option is surgery. I was expecting the glasses to an extent, but not to be told possibly surgery!!!! Patching, not surgery!!!

To make it worse, our insurance coverage for glasses is minimal and we've found it better to just find a good deal on children's glasses than to deal with the co-pay's etc to USE the insurance. SO... While I was at work BFF took Peanut and her Duck (who also has the same problem though not quite as severe fortunately) to look at glasses. They picked out some nice glasses. My little Peanut will be sporting some cute pink specs in a week. She is quite excited about them apparently. I really hope it helps. :)

Financially, this is draining me more than anyone can imagine. I need to find a money tree and fast!!! NUMEROUS trips to numerous doctors, parking, prescriptions, medic alert bracelets for tiny wrists, glasses... I don't know what will come next and bluntly I'm SCARED TO FIND OUT. But... as my facebook status currently says, I am practicing faith building exercises while praying for money for glasses for Savannah, medic alert bracelet for Elisabeth, and numerous other medical expenses associated with their new found medical conditions. I WILL HAVE FAITH THAT GOD WILL PROVIDE!!

And I will. Because I know that God will provide for us. :)

Read more...

The rest of the outcome of yesterday's appointment...

I promised I would tell what was recommended and left to come yet, but was too tired, so here goes:

The doctor has recommended medication, but did not prescribe any as of yesterday. He sent me home with medication information packets about the med he wants her to be on and the vitamin he would also put her on with it to counteract some of the side effects to her body. He wants me to think it over, read up on the meds, talk about it with the people in her life, and make a decision and call him back. As I’ve realized in the last 24 hours that it appears she’s actually having multiple seizures a day, I’ll probably end up going with the medication.

She is going to be having a 48 hour ambulatory eeg next weekend. It’ll be like the eeg this past week, except not sleep deprived. LOL She’ll go in Friday afternoon and have the wires attached and all the stuff will be in a little backpack for the monitor. She’ll wear it all weekend long and then will have it removed on Monday morning. They hope to catch an actual seizure during the monitoring. This test will be a little annoying for her as her head will be totally wrapped up and she’ll have to carry the monitor with her everywhere, but, overall, it’s no big deal.

She will be having a sedated MRI, just to be 100% certain that there is nothing physically wrong. The doctor is fairly certain the MRI will come back normal, but it is a precaution to be sure they haven’t missed something. She has to be sedated because she is too young to stay still for an hour. I am not totally happy about that part of it. Don’t get me wrong, I understand that she NEEDS to be sedated. I also know how I react to sedation/general anesthesia. I pray, and ask everyone else to pray that she does NOT react that way. As she will be quite miserable if that is the case. I usually wake up from anesthesia vomiting. I can only hope that she doesn’t.

She is also going to have a hearing test done. Ironically, this doesn’t relate really to the seizures themselves. Well, not totally. Her doctor said that many epilepsy patients do have some hearing issues. He doesn’t believe that the type of seizures Bug is having would really effect her hearing. However, he did note that her speech is just a LITTLE off. Her vocabulary is fine, but her words sound a little off, almost as though her words aren’t quite whole. So since he can use the seizures as a loophole basically, he ordered a hearing test for her.

He said we may consider some more testing later, including some genetic testing. But for now that is it. I now have a slight concern that I may want to consider having her sister Peanut checked just in case. They are fraternal twins, not identical, but I still just wonder.

Of course Peanut, Bug, and BFF's DD Duck all have appointments this week with the Ophthalmologist regarding possible lazy eye. Peanut and Duck are almost definitely going to get the diagnosis. In Peanut’s case, I’ve been TRYING to get a referral for a while, back when we were still down in Kentucky. But I’m here now and we have it. Bug is 99% clear though. It’s a precaution. Her neurologist saw no sign of it and said he doubts they will find it but is glad that she’ll get that nice thorough check anyway.

Peanut still have her appointment later this month with the respiratory specialist to see about how her reactive airway disease is doing and if we are moving her into the realm of asthma or not yet. I will keep you all updated on that later in the month.

I want to thank everyone who's been praying for us, it means a lot to me.

Read more...

Jesus in my body.

So this past week I had my stethoscope out to listen to one of the kids chests who'd been coughing quite a bit lately. The pediatrician had told me Bug in fact DID have a murmur and it was easily heard so I wanted to hear it for myself.

I was listening and then had BFF listen. Bug then wanted to listen to what we were listening to. So I put the ear pieces gently in her ears and made sure the stethoscope was over her heart. Her eyes opened wide and she listened intently. When she was done I asked her if she had heard her heart going "thub thub thub" in her chest. She looked at me and very intently said:

"Jesus in me mommy, Jesus inside me, Jesus in my body, Jesus make noise in me"

It was just about the sweetest thing. I told her yes, Jesus is in your heart. But she insisted that no, Jesus was in her.

I had mostly forgotten about this until we were at the doctor's yesterday and he was listening to her heart and told her that and when he was done she asked him "You hear Jesus in me??" very excitedly. After a quick explanation the doctor couldn't stop laughing and thought it was the sweetest thing in the world.

My daughters are convinced that Jesus bangs his drums when thunder rolls, and that Jesus is the reason their hearts go "thub thub." I think it's sweet :)

Read more...

Medic Alert Bracelets

Okay, wanna talk overwhelming???

Try shopping online for a medic alert bracelet for a SKINNY 3 1/2 year old child. We FINALLY think we find one that will work because they give a measurement that is small enough and it says not recommended for under age 5. HELLO??? FOR REAL??? WHO ELSE IS GOING TO NEED ONE THAT SMALL???????? ARG.

Read more...

A diagnosis

Bug had her appointment with the neurologist today. And she was given a diagnosis. She has epilepsy. I am both relieved and stunned.

Relieved that I'm not crazy, I really WAS seeing her have seizures. That my instinct and medical training were correct. And that I really DO know my daughter better than the medical facility she was previously treated at.

Stunned because even though my gut said she was having seizures, I don't think I was really prepared or expecting to be told she has epilepsy.

I had to go to Children's without another adult today, just Bug and I. And while it was kind of nice to have that time with my little Bug, I admit it would have been nice to have had some adult support. BFF told me when I got home she had a hunch that this was the diagnosis I was going to receive, and she hated that I had to go alone.

I will post more tomorrow or Sunday about what we are going to do in the days and weeks to come regarding further testing and treatment. But right now I am SO SO SO tired.

Read more...

Sleep Deprived EEG

Yesterday I was WAY too tired to properly blog, or type my own name for that matter!!! LOL

Bug had her "sleep deprived EEG" yesterday. The night before I had to keep her up until after midnight. BFF's DH said it wasn't too bad at first, and then I got home from work and took over, she was pretty good until about 11 pm. Then she turned loopy. But we kept her up until about 12:15 am.

Then BFF's DH woke her at 5am. A HUGE thank you to him for being the one to wake with her and therefore allow me to sleep a couple extra hours!!! :) I got up at 7 and resumed the keeping her awake duties. Around 10:30 we started getting everyone out the door.

The car ride to the facility was pretty rough. We stopped at Dunkin Donuts on the way for BFF and I. I had Bug come in with me just to keep her moving. Shoot, I wanted to fall asleep so I KNEW she wanted to! LOL

We were almost there and the other kids were no longer able to keep her sufficiently awake for me, so I jumped in the back of the van and annoyed her enough to keep her awake. THAT WAS ROUGH.

She was much more alert at the office though, playing in the play area, though arguing with me over where to sit, etc. Oh yeah, loads of fun. LOL

She finally was called back and she was SUCH a good girl. She sat still and stayed awake. Putting the wires on was hard because she had to be so still but stay awake. I promised her 10 "monies" and a trip to starbucks at a later date if she stayed awake. :) She earned it fair and square! LOL

She did everything the tech asked of her. She did NOT ever throw a temper tantrum, or cry or anything that a cranky overly tired usually does. I was SO proud of her!!!

When she was FINALLY told she could sleep she did so with PLEASURE. She only got to sleep for about 10 minutes, but I am sure she enjoyed it completely!!! :) :)

Tomorrow bright and early she and I head out to Boston for her appointment with the neurologist. Hopefully he will have some answers for us about what is going on with her. Or a direction to go.

Thank you for all the prayers up to this point and please continue to pray for my little Bug!!

Read more...

Milk is GOOD

So the pedi's office just called and reported that Bug is NOT allergic to milk proteins. YAY! :)

Read more...

EEG and an appointment at Children's

I had made a decision that I was no longer going to blog about this situation with Bug, or post Facebook statuses about it. But after much thought and prayer I decided that I was not going to let anyone's words or actions prevent me from telling my friends, and strangers who might need to know they aren't alone, what is going on.

Children's Hospital neurology called yesterday, and the woman I spoke to initially was so kind and wonderful. She asked me to tell her what was going on, and when I said it was kinda long she told me to take my time. So I did. And she said it definitely sounds like Bug is having seizures and they'd like to see her. She said their scheduler would call me back. I gave her BFF's name and phone number in case it was after I went to work.

They called me back, as I was about to walk out the door for work. LOL I scheduled her appointment for Friday, when I'm supposed to be at work. And got the necessary information, or so I thought, and walked out the door. I got to work and told my manager about the appointment and she was very gracious about it and it will not be an issue that I am missing the time. I will just get there as quickly as I can.

BFF took care of sending medical records and sending off the referral information to the pediatricians office. Somehow in all the rush of everything we totally forgot to get the name of the doctor she would be seeing! So the wonderful gal at the pediatrician's office couldn't process the referral. LOL

So I worked the rest of my shift, it was rough, I was prone to crying because I've reached that point where I am just out of control. Something is wrong with my little girl, and while now, TODAY, I realize we are on the path to answers, and with the GREATEST doctors we can get, last night, it was hard to see that. And I just felt totally out of control and upset and yeah... So I got through my shift, came home, had some DELICIOUS cheesy lasagna, and decided to hop in the shower.

Now once upon a time I took HOT showers, but living with 10 people you learn not to, because when you are the LAST person you want to be able to take at least a warm shower so you take less than hot showers when you're the first LOL. So I was taking a warm shower, really just saving the hot water for the end. But less than halfway through my shower, with body parts left to shave and conditioner still in my hair, the water ran ICE COLD, and I mean I saw penguins in my tub cold!!!!

It was the last straw. I started bawling in the tub, shut the water off, sat down soapy and cold, and cried for a good 10 minutes or more. And then hoped that the water might be lukewarm so I could finish shaving and rinse my hair. Nope, still penguin cold. *sigh* BFF's DH later checked the water and it was STILL ice cold, maintenance is coming to check on our hot water heater today. :)

So first thing this morning I called the clinic back and asked for her doctors name and emailed it to the pediatrician's office for the referral. And then was told Bug needs a sleep deprived EEG before her appointment on Friday. And all the appointment options were during my work shifts. I took the one that seemed the least intrusive though and immediately called my manager and told her and she said don't worry about it. LOVING MY MANAGER!!!!! :) :)

Now the GREAT thing is HOW EXACTLY do you sleep deprive a 3 1/2 year old for a NOON EEG?? Well, ya wake her up at 3 am. BUT, this results in a sleep deprived MOMMY too. Well, make that 2 sleep deprived mommy's, since BFF has offered to get up with me to help me out. I LOVE MY BFF!!! :) :) And my other good friend Tink is getting coffee detail! LOL She rocks and knows children's pretty well too. I may still ask her to go with me on Friday, but I want to be a "big mommy" and do it myself LOL

I'm still hopeful for answers. I have asked all my friends to pray for Bug and for me, and the doctors too. I am sincerely hoping we get some answers SOON.

Read more...

And the fun continues

So we decided to go get lunch, McDonald's. okay, it's not THE healthiest, but the kids were being pretty good overall. And we needed to go get sneakers for Peanut, Duck, and Diva. So we headed to Wally World after the burgers and nuggets. We got the three girls hooked up with sneakers and then BFF found some nice looking shoes for Bug for church. They fit decently, but her heel slipped out of them. I had her walk around in them a bit and asked her if they fit, she said no. I asked her about three times. And every time she said no. I was disappointed as they were VERY cute and inexpensive shoes! However, when we went to put them back she got sort of upset. So I asked if she wanted them. She said yes. So we got them in brown and black! LOL

We got a few more things and then went over to the pharmacy area to pick something up. We happened to be right beside the glucose monitors. We noticed the prices. ONLY $9 for a glucose monitor!!!! OMW!!! I thought they were PRICEY. So BFF and I looked at each other and talk it over and go we can prove the hypo this way. Altogether on the kit, lancets, test strips (only 20, I'll need more), and alcohol wipes, I only spent $25 dollars.

From the time we were looking at the monitors, got in line and got to the car, so MAYBE 10 minutes, Bug went from normal to ready to pass out. So we immediately ripped everything open. Thank goodness both BFF and I were both gestational diabetic and knew exactly what we were doing, and ironically enough, I am pretty sure I ended up buying the same exact brand of monitor I had when I was pregnant. LOL Poor kid ended up getting stuck like FIVE TIMES before she bled enough to get a test. And she was SO not happy with us. But I was SO VERY glad we paid for it all, she was at SEVENTY TWO (72). Which while technically within the range of normal is on the far low end of it, and at one hour post meal it seems TOO low to me.

Her post dinner number was a more respectable 119. I am going to be very interested to see her fasting number in the morning. hmmmm....

Read more...

I'm a blog geek...

Yes, I'm a total blog geek. I changed my blog's background because it's fall and the pretty pink and green flowery background was just too SPRING for this time of year. But this new background was just TOO CUTE anyway. Isn't the owl just so adorable? I'm not normally an owl person. This one was just cute though.

So anyway, a brief moment of cuteness thrown into my otherwise pretty crazy and sorta scary world right now.

Please continue to pray for us. We had movie night last night. In honor of BFF's DS3 being declared NOT allergic to milk, we bought some soy free chocolate candy last night. The girls were all asleep last night though. So they are rewatching the movie and we let the girls each have ONE mini candy (Halloween bags of candy so mini pieces ya know?). Bug comes in here not five minutes later and she is pale and flushed and sweating and doesn't look good and says she doesn't feel good and yeah... You could tell she was having a sugar reaction. CLASSIC hypoglycemic symptoms. From ONE mini piece of candy. *sigh*

So I held her and watched her until she seemed to be doing better. I happened to have my stethoscope downstairs and listened to her heart. It had been mentioned when she was younger that she MIGHT have a heart murmur. It seemed to come and go though, and I remember reading once that sometimes in infants it's just that as they are growing that the heart isn't keeping up basically and that happens. I remember her one pediatrician saying if she heard it again at the next well baby we'd send her in for an ECHO. But then it was gone. Well, delicious as military record keeping is, it wasn't CLEAR that she HAD NOT had the ECHO done, and her NEW pediatrician thought she HAD and that the murmur had been declared present and functional. And therefore said nothing to me about the fact that she heard it at the physical.

But the pedi who saw her Friday DID say something about her ECHO being clean and I said she never had an ECHO. And the pedi was stunned and I explained everything and when she listened she said she could definitely hear the murmur but TRULY feels it's a functional murmur and nothing to worry about as she exhibits no signs of a child with cardiac issues. I THINK I agree, unless all this other testing turns up no good answers. But I took advantage of having my stethoscope right here and listened to her heart. WOW MURMUR!!!! I knew basically what a murmur should sound like, but had never heard a real one. But her's is real audible with a good stethoscope. Classic sounds like I was taught, the thub thub of her heart beat with an underlying echo. WOW. I turned over the earbuds to BFF and had her listen and she could totally hear it too! It really was cool in a way!!! LOL

Anyway, back to my point, please continue to pray for my baby girl. Both girls go to the dentist tomorrow morning and I'm hoping they do well. And enjoy my new background!!!! :)

Read more...

more on my thoughts and Adventurer's

So more about my thoughts from earlier...

So last night BFF did some research and we discovered that we think Bug may actually have hypoglycemia including cases of Nocturnal Hypoglycemia. This is an excerpt from a website on hypoglycemia in kids:

The Symptoms of Hypoglycemia (Low Blood Sugar) in Children

The symptoms caused by low blood sugar come from two sources and may resemble other medical conditions.

* The first symptoms are caused by the release of epinephrine from the nervous system. these include sweating, pale skin color, shakiness, trembling, rapid heart rate, a feeling of anxiety, nervousness, weakness, hunger, nausea and vomiting.
* Lowering of lowering the brain's glucose causes: headache, changes in vision, lethargy, ,restlessness, inability to concentrate or pay attention, mental confusion, sleepiness, stupor,and personality changes.

(from http://kidsgrowth.com/resources/articledetail.cfm?id=2132)

It is STUNNING how many of these symptoms fit Bug. She sweats, gets flush and pale, shakes, gets hungry, and yet vomits at the drop of a hat. She falls asleep very suddenly compared to the other 3 girls too. BUT... the one symptom that doesn't fit is that she has what I truly believe are petite mal seizures with many of her vomiting incidents. However, I know from my EMT studies that drops in blood sugar (which is exactly what hypoglycemia is), can in fact cause seizures.

As for the Nocturnal Hypoglycemia. As I read about it, it seems more common in diagnosed insulin dependent diabetics, but she still fits many of the symptoms. Here's a description:

Nocturnal hypoglycemia refers to low blood sugar levels at night in a person with diabetes. Blood sugar levels can drop below a safe range at night if a person eats too little food after taking his or her usual nighttime insulin dose or takes more insulin than prescribed in the evening.

Signs of low blood sugar at night include:

* Restlessness, unusual noises, talking, or nightmares
* Waking up feeling tired or having a headache.
* Having damp clothing and bed linens in the morning (night sweats).
* Having a high blood sugar level in the morning.

(taken from: http://www.revolutionhealth.com/articles/nocturnal-hypoglycemia/uq2844)

Bug has had nightmares and babbled in her sleep from a young age, and is a restless sleeper, she frequently awakens feeling damp and sweaty as though she was exercising in her sleep!! This is a big one for me! She is the most night sweating kid I know, considering she is NOT a HOT person (you know those people who are like space heaters and you just wish you could curl up against?? Bug is NOT that person!!! LOL)

So anyway, now I really wanna push for a glucose tolerance test. The first website says it's really the only way to prove it in a child. I feel it is VERY important to have the diagnosis. If we are right, she will have a medic alert bracelet and we will take the needed precautions to keep her healthy, but it's not the end of the world diagnosis.

BFF and I discussed whether or not to pursue the seizure disorder testing or not, and I want to discuss it with another friend of mine who's child has been through it, but overall I believe my answer will be yes. As BFF worded it, JUST IN CASE there IS an underlying, barely showing itself disorder that's just waiting for it's opportunity, do I want to stop this course of action and possibly miss a chance to keep her safe? No, I don't. I want to KNOW FOR SURE. So I will allow the seizure disorder testing.

It's been a rough week in many ways. I truly feel like my patience has been tested and that Satan is trying to get me. But today was an absolutely blessed Sabbath. I so easily could have shut off the alarm and gone back to sleep, but we didn't, we went to church. And I'm glad.

We arrived and it was raining pretty good, but our pastor was walking out to the parking lot with his umbrella helping people into the church!! I LOVE our new pastor, he is SO great!!! I admit, I missed the entire sermon! But the sense of peace just being IN the church was nice. And Adventurer's started today. This was a blessing. We weren't even sure they were going to DO Adventurer's this year. (Adventurer's is like Scouts for our church). The girls are old enough to be part of the Little Lambs program this year, so I am very excited. BFF volunteered us to be the LL leaders, and to have me help the kids with their marching. LOL Guess my Army time will come in handy.

It was a LONG Sabbath, but a wonderful, blessed Sabbath.

Read more...

More thoughts

So after making last nights post BFF did a little more research. She believes she's found the correct condition to the symptoms. Hypoglycemia, with instances of Nocturnal Hypoglycemia. The description of the symptoms of these fit. More later, gotta get ready for church

Read more...

Topsy Turvy...

Well... I knew life couldn't ever slow down.

Earlier this week we finally found shoes for poor Bug. She has very wonky feet. Normal width in the toe box, wide through the arch, extremely narrow through the heel, and no fat across the top, which is odd for a toddler. She is a tough fit. After much frustration we found a store in Lexington that specializes in fitting difficult feet. Of most importance, they carry multiple brands. Well, we got her into a pair of sneakers that set me back a good chunk of change.

For their good behavior on this outing, we took all 7 kids across the street to Starbucks for a treat. After her hot cocoa and pumpkin bread, Bug started reacting badly. We gave her some more food and got her moving but it shook me. Later that evening BFF and I discussed it. Several pieces began to fall into place and the big picture started to look a little less pleasant. My little Bug might not be so healthy. So after 2 days of asking for my schedule early at work, BFF took matters into her own hands and just called for an appointment and hoped for the best today.

Well, after hearing our concerns, the pediatrician's office wanted to see Bug TODAY. Unfortunately, the latest appointment they could get us was at 2:40, I got off work at 3. BFF called to tell me and I talked to my on duty manager who was GREAT about it and let me call in my relief early so I could go. I owe them both!!

We got to the pedis and explained everything to the doctor. Without getting into ALL the details... The doctor is a little confused on what it may be, because it is NOT presenting with any classic symptoms of a particular condition. SO... although neither of us feels it is this, she sent her for blood work to rule out a milk allergy because the "incidents" all seem to occur with milk. I agree to ruling it out mainly because the wait for appointments at the allergy clinic is literally 4 months!!!!!

The pedi is sending her to the neurology clinic to test for epilepsy. I actually do NOT believe she has epilepsy. But I will go on with this testing only because it will make it that much easier to get testing for what I believe is really going on. I believe she has some form of diabetes.

Diabetes CAN cause seizures, and since the "incidents" that have been witnessed have been petite mal seizures, IF they are seizures at all, it seems more likely to be NON epileptic. Since the incidents ALWAYS follow food consumption, especially milk, it seems more sugar related, which is more diabetic. Plus, we have the family history, although of type II not, juvenile, and I was gestational diabetic, insulin dependant. AND Bug was low blood sugar at birth... yeah, my connect the dots leads to diabetes, not epilepsy.

So... I tried to make the appointments, only to be told that the pediatrician needed to make the appointment, called the office, left the message and never heard back, I WILL be on the phone first thing Monday morning. *sigh* I want to RULE IT OUT.

We went straight to the clinic for the blood draw, and poor Bug was JUST there yesterday for a blood draw. She got in the room and very matter of factly said "Mommy, my getting poke." She didn't cry yesterday, just got agitated, but today she did cry a bit, but only for a few seconds and when it was all over and she got to pick out her TWO stickers (Cinderella and Tinkerbell) she was all smiles again.

Anyway, I will try to keep everyone updated. The girls have their very first dental appointment on Monday! I will post results!!

***Edited on 12-28-09: This is the day that changed everything for Bug... That day she got sick buying shoes for her, and the subsequent appointments led to a diagnosis that changed her life. Initially I was scared by it. I admit it. But once I came to grips with it, and accepted what needed to be done, she got appropriate treatment and has improved SO MUCH. In many ways we are still adjusting to it, but 2 1/2 months later it's MUCH easier to accept than it was back in October.***

Read more...