And we are out

We were discharged this evening, they cannot figure it out at all. So they discharged us and said to come back if it happens again.

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Back in the Hospital

Bug had an incident yesterday and we are back in the hospital. She had an MRI last night and the good news is they didn't rush her into surgery or straight to the ICU! Instead she was admitted to the neurology floor for monitoring.

We definitely are asking for prayers as the doctors try to get to the bottom of what happened instead of settling for "she seems fine now."

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Another Trip to the doctor

Okay, tonight I took Miss Peanut to see our WONDERFUL pediatrician. You know I just LOVE a doctor that sees patients at 7:30 at NIGHT. Anyway, the reason for the appointment was to request that Peanut have an MRI of her brain. See, I know I'm a bit paranoid sometimes, however...

There is a surgery happy ophthalmologist wanting to practice on my Peanut. And I don't feel like it's fully explained yet. Plus, when Bug's neurologist called and told me about Bug having Chiari, many of the symptoms that he mentioned, Peanut had. The more research I did, the more I realized, that Peanut NEEDS to have an MRI and TRY to rule it out.

Chiari COULD account for her vision problems. Chiari COULD account for a lot of things, or she could be Chiari-free. And I don't know, but that is the problem, we NEED to know. I need to know that we are NOT operating on her eyes when they aren't the real problem in the first place!!

The doctor is a very down to earth woman, who doesn't blow me off. She listened to me, and agreed with my reasoning. She said she would work her end on the MRI referral. Meanwhile, I am free to pursue having her seen by neurologist if I want to. If I choose to go that route, she will authorize the referrals.

I am going to call Bug's neurologist and see if he will see Peanut. I don't know that he will, he is a specialist in Epilepsy, and Peanut doesn't have Epilepsy. But I'm hoping that he will take her anyway just because he sees Bug and I don't really want to have multiple neurologists! IF Peanut DOES have Chiari, I KNOW I will insist that she see the same neurosurgeon. My thought right now, I would LIKE to have her seen by the neurologist to make sure there is someone who really knows what to look for when the MRI is done. Having someone I already have a rapport with would be nice too!

Well, I'm off for some much needed rest!!

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Bug's MRI results...

Well, yesterday Bug's neurologist called with the results of her MRI.

It was NOT clean and clear as expected. :( Bug does NOT have any tumors (since everyone asks this right away). She does have a Chiari Malformation.

What is a Chiari you may ask? It's where the cerebellum in her brain has formed improperly and is protruding downward toward the opening in her skull by her spinal column. This website at Children's Hospital Boston gives some pretty good information about Chiari but no pictures. This site Conquer Chiari has a GREAT visual of a NORMAL cerebellum and a Chiari. So that should help you understand what is going on in my Bug's brain!

The neuro said the Chiari COULD be causing some of the seizure activity, but he firmly believes she has both Epilepsy AND Chiari. Mainly because all her previous testing was SO conclusive for the electrical signatures for a seizure, and also because the medication she takes is HELPING.

The biggest current concern with Bug's Chiari is that on the MRI they already could see pockets of fluid, which is a symptom of the Chiari preventing the normal cycling of her cerebro-spinal fluid within her brain and spinal cord. This very likely will require a shunt to be placed. For that reason we will be meeting with a FANTASTIC neurosurgeon later this month.

Due to some information I have found that there is a SMALL chance of it being genetic (and even her neuro said that yesterday), and the fact that Peanut's Ophthalmologist wants her to have eye surgery, I am getting Peanut into the Pediatrician next week to talk about having her have an MRI. I want it done ASAP. She exhibits some of the signs of a Chiari, including eye problems. I do NOT want to operate on her eyes only to discover that her problem never was her eyes but was her brain. Fortunately, I think the pediatrician, who already knows I am not comfortable with having Peanut's eye's operated on, will agree with me.

For now though, we are just in status quo mode for the most part. Bug doesn't know anything is wrong with her. I have to watch and call the neuro if certain symptoms present themselves, and make sure she doesn't ride any roller coasters (wasn't gonna happen anyway LOL).

I definitely ask everyone for their prayers to help us get through whatever is put in front of us, and for the doctors treating both my little girls. That God will guide them and give them the wisdom, skill, and knowledge they need to do what is BEST for the girls.

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Bug's MRI

AT LAST

We FINALLY got to do her MRI. In October when Bug was first diagnosed with Epilepsy the neurologist told us she needed an MRI, but it had to wait... She had to get medically cleared. What held us up for SO long was her heart murmur. "It's mild, it's benign, it's nothing" is what I was told for most of her life. It would come and go and for over a year I would be told "we'll do more testing if we hear it next time" but then it wouldn't be there... Then it'd come back. For so long I let it go thinking she's healthy, she's acting healthy, if she had a heart issue she wouldn't seem so healthy. The epilepsy diagnosis and then being told she had to be sedated for this MRI changed that.

So, we had to get this murmur issue cleared up. That resulted in us seeing a cardiologist in November and FINALLY putting all the heart murmur issues to rest. She had a full workup, and EKG and an ECHO. And in just over 1 hour, an awesome doctor told us that what we'd been told all along really was true, it's benign. Eventually she will outgrow it, but NO ONE can say when. It will probably come and go for years. She is a skinny kid which makes it easier to hear. And that unless there seemed to be a dramatic change in it, there was no need for her to continue to see a cardiologist regarding it. Just to be aware that it's there.

So FINALLY we scheduled the MRI, for about a month later, first available appointment, and 2 days before Christmas. Right when EVERYONE was visiting. There was a list of rules though... including what would cause me to have to CANCEL the MRI, such as an illness. Because she had to be sedated, even a MINOR illness would cause her to be unfit for it. So we waited...

And a couple days before the MRI she got sick. NO!!! Sure enough, the day before I knew she would NOT be given the green light for it, so I called and cancelled it. We re-scheduled it, but it was over a month away!!! *sigh* She had plenty of time to get healthy! LOL

And she did and stayed healthy. And then I got sick about 5 days ago... and started to worry. She HAD to stay healthy. If I had to cancel this again it'd be another month. But she stayed healthy, and we went. I figured that she appeared healthy enough to me, that at this point, THEY would have to say no!

But they didn't. She was cleared!! And we did it!! She was pretty unhappy about the IV being put in, but once it was in, she was okay. She knocked out pretty easy and BFF and I were allowed to remain in the room with the MRI, with ear plugs! And BOY was I glad for the ear plugs, that sucker was L-O-U-D!!!! Even with the ear plugs!

After the 1 hour or so in the MRI we went to recovery. They were great there. The nurse said they wouldn't even try to wake her for 20 minutes or so if we wanted to get a bite to eat and bring it back. We took advantage of it, we were STARVING!! I was so impressed with how slow and gentle she woke Bug up. Just going for a quick eye opening the first time, a little more the second time, sat her up after that and got her to make eye contact with me and BFF. Each of those times she let Bug go back to sleep. But the next time she sat the bed up more and convinced her that she wanted some juice. We had a very groggy Bug, but and awake Bug! The nurse later described the medication they used for sedation as giving you a similar feeling as drinking quite a bit of alcohol. Shoot, I'd wanna go back to sleep too! LOL

So we got her to drink some juice and eat some Goldfish and then go to the bathroom and we were ready to go! We left and headed for Au Bon Pain in the mall. There's one in the Hospital, but the nurse advised against giving her the soup she was requesting due to the distance of our drive. She was concerned that it would give Bug and upset tummy. So we went to the mall instead, so she didn't have such a long drive home. Then we went to my work to pick up a few things and then finally, to her relief I'm sure, home.

Once I got her all changed and ready she was HAPPY to get into her bed!! The nurse warned me she may wake up all refreshed at 3 am wanting to watch a movie. I hope not. Bug is usually a little more likely to happily take some extra sleep, but if she does, I'll come down to the couch, pop in a movie and let her watch it! LOL

Glad to be home, and heading to bed soon!

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Score one for the team-Update

This is an update to this post: Score one for the team.

In this post I had expressed concern over Bug's speech and potential hearing loss. The audiologist that tested Bug really did feel her speech was fine and she just tired out toward the end. Although I felt she was right, and that the repeat test this coming April would show that, I was still VERY concerned by her seemingly garbled speech. I was hesitant to follow the suggestion of obtaining speech therapy through the school district. I want to homeschool my children and I don't want them to ever be involved in the public school systems.

I made the decision to wait at least until the first of the new year to consider obtaining services. I felt we were too busy, with the holidays, numerous appointments for both Bug and Peanut, and visitors coming in, to try and start ANOTHER thing, plus I wanted to try to work on her speech myself and avoid the school district if I could. YES, I am stubborn. I was giving myself THREE MONTHS. But, Bug's pediatrician actually was backing me on all of this, she said to me, "Mom, YOU need a break, it's okay, there will be time for her speech to improve, three months isn't going to make or break it. But YOU look like YOU are about to break." Have I mentioned how much I love her?

Well, in those three months we have started her on medication for her epilepsy and seen DRAMATIC improvement. In her seizures, and her SPEECH. She is having very few seizures now (in fact I don't think I've seen her have one except when she was sick and running a high fever). And she is now speaking as well as ANY of the other three three year olds in the house. Her neurologist called back when she got really sick with the hand foot and mouth, (before she really got sick) and when I told him how improved her speech was, he told me he wasn't overly surprised, but VERY pleased to hear it. He felt her epilepsy was giving her some developmental delays that the medication improved and allowed her to overcome. Given that most of the time we can now understand her, I agree! :)

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sick baby update 3

Sunday Morning: Bug woke with another HIGH fever (104.5) and I was at my wits end. I was thinking shouldn't the antibiotics at least be helping to bring the temp down by now?? So down the hatch with MORE motrin, her antibiotics, and her regular daily meds. And into the tub to try to cool her off. And when she finally got some attitude back she and I were sticking tongues out at each other. It was then that I noticed a small sore on the tip of her tongue. I called BFF and showed her. She reminded me that Bug had said the other day that her tongue got "stuck" in her sippy cup.

Shortly after Bug got outta the tub I got a call, from her pediatrician!!! She wanted me to bring Bug in, on a SUNDAY MORNING. We made the arrangements to be there in a little over an hour. We live about 45 minutes from the office, I wasn't dressed yet, and the roads were questionable from the overnight snow. But we got there and saw her. She tells me it is NOT a UTI as diagnosed at Children's. I kinda suspected it wasn't. Nothing grew in the culture. So we could throw out the antibiotics more than likely. She asks all the questions about cough etc. while she's looking her over and I tell her the ONLY thing is I noticed that sore.

She looks in her mouth and nods and says "along with the several small sores on the back of her throat, it makes sense, she has hand foot and mouth" SIGH OF RELIEF. My poor baby is miserable, but I have an answer that makes sense FINALLY. We talked over the 2 biggest issues for Bug with this illness:

-Fever control: She is running HIGH fevers. Fevers are not uncommon with HFM, but high fevers are not so common. Bug has epilepsy which makes the high fevers more dangerous. Her doctor advised us to do piggy backed tylenol/motrin every 3 hours for at least 24 hours straight ROUND THE CLOCK to keep her fever free and give her body a break. Then to let her body have a chance. Last night was the night I got to sleep and I'm about to go wake her and see how she is. Please let's hope she's fever free!!! Or at least low grade. I NEED to get her off the meds because they can hurt her liver as can one of her regular meds and the combo of the two worries me.

-Hydration: The sores in her mouth and throat make her not want to eat and drink. Obviously that is not good. We saw this yesterday. I had to break down and FORCE gatorade down her with a medicine syringe. She was actually pretty good about letting me do it that way!! This tells me the sores IN her mouth are hurting more than the sores in her throat. BFF and her DH said she did better in the evening, and I am grateful for that.

Today is a new day, and I am hoping she is feeling better today. We have appointments for Duck and Peanut to have their eyes looked at again and see if their glasses are helping with the lazy eyes. I'm praying for Peanut especially that it is because if not we are looking at surgery. :(

Stay safe all my friends in the coming weather and I hope you have fun in the snow!!!

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sick baby update 2

The last 24 hours have been rough for poor little Bug. She had started to feel better after being at the pediatrician's office. But when we started to get the kids ready for bed last night things went down hill FAST. I'll try to describe it as best I can for you.

She was standing there eating her gingerbread cooking and suddenly started to shake. Initially I thought it was shivering, but it progressed to be stronger than shivers, but less violent than a full fledged grand mal seizure. I truly believe she had a seizure. I laid her down on the ground out of concern that she was heading for a grand mal. I called her name and she eye tracked to me (she moved her eyes to look at me) but that was the most reaction I could actually get from her for several minutes. Even when she started to react more she was still twitchy in her hands and feet. And that lasted for another hour and a half. I tried to get her to stand and she fell at first. This just confirms for me that she had a seizure.

BFF picked her up and was holding her and we grabbed the thermometer, it wasn't reading too high (101's) but this is the same thermometer that the Nurse Practitioner told me only hours earlier to replace due to it's age. While BFF is holding her she could FEEL Bug's temp climbing. So we rushed off to Wal-Mart with Bug and BFF's DS1, he was SO concerned about his "Love-Bug." We bought a new temporal thermometer, an oral/rectal/underarm thermometer (as much as any person hates rectal temps, I was to a point of being willing to do it to her last night. So I wanted one that COULD go rectal!), dye-free tylenol and motrin (we MUST have dye free because BFF's DS-3 is allergic red #40 which is in most regular liquid meds), and a couple other things.

We managed to get the oral thermometer opened on our own and BFF was getting the temporal opened while I took Bug's temp with the other thermometer. Mind you, this is still IN Wal-Mart. Her underarm temp (adjusted) was 105.5, I immediately took it orally (wasn't sure my 3 1/2 year old would cooperate with me but I did it and she did), it was 105.9. I didn't even wait for the temporal to be ready, I headed for the car. We got her strapped in and told DS1 he was going to be dropped off at home. By then the temporal thermometer was ready for use. I used it 4 times and ALL FOUR readings were 105.9, 106 or 106.1. No matter which way we tried, no matter what I tried, this child was ON FIRE.

The only decision to be made was go to the closest ER or go to Children's, which is AT LEAST a 45 minute drive away. The problem is, the closet ER is a hospital her pediatrician's practice does NOT have privileges at, and therefore there is little communication with. Also, a serious factor for me, ALL of Bug's specialists, and therefore her big fat electronic medical record, are at Children's. PLUS, she had just had a TON of blood work done THAT AFTERNOON at a Children's facility. IF (and I knew it was a BIG if) the bloodwork was done already, it'd be in the computer and it wouldn't have to be re-drawn (It turned out it WAS done, so it was a good call). SO... I decided to risk it and drive to Children's.

We already had Bug's Diastat with us. Diastat is her emergency seizure medication. If she has a seizure lasting more than three minutes (and in this instance it would be a grand mal seizure that interferes with breathing), I can give her the Diastat rectally to stop the seizure. With a fever of 106, this is a very real concern. So I was prepared for this.

I called the pediatrician's office and left a message with the answering service. I received a call back within 10 minutes, before we'd even made it home to drop off DS1. I explained everything and why I felt Children's was worth the drive and the doctor agreed with me. She asked if I had given her anything for the fever yet. I don't REMEMBER telling her that I was afraid they wouldn't believe her temperature was that high if it came down, but BFF said I did. But the doctor reassured me that they WOULD believe me. She told me to give her motrin and start bringing the fever down. By the time we got to Children's an hour later (darn road work) her fever was down to 104.3. So she was STILL hot.

We were expedited due to how hot she was. I actually was quite impressed with the front end staff. The check in desk gal was so friendly and when she put the bracelet on Bug she said "She is burning up" and had her pushed ahead of other patients! We got a urine sample for them and next thing I know we are in a room. They had given her tylenol and within another 30 minutes she was down to 103.4.

When we got settled and she started waking up a little more as her fever was coming down, the nurse offered her a popsicle. She happily accepted. It was bright green and I have some great pictures of her bright green tongue. She didn't eat all of it but she still enjoyed it and it was nice to see her FINALLY perking up a bit.

The resident came in and well... let's just leave it at he and I didn't get along real well. He pretty much tried to say that she did NOT have a seizure, she just has a virus, blah, blah, blah. He also told me that what my daughter's doctor told me earlier that day was FALSE, to NOT bring her to the ER with a 103 fever... I was ready to rip his head off.

Then the attending doctor comes in. HE was different. He was reasonable. He said listen to your pediatrician, we like seeing kids, but if you feel okay keeping her home go ahead. He still felt it was viral, but he listened to me when I said it was a seizure. He did NOT feel it warranted calling neurology as it didn't last for more than 2 minutes at the most and even I say it was NOT a grand mal seizure.

So a little later the resident comes back in basically saying his same little line. And then says as nearly an afterthought, oh, since you did get a urine sample we'll dip it JUST in case. But I doubt it's a UTI.

About 20 min later he walks in again. And asks the most LAUGHABLE question... "are you sure her urine sample was a clean catch??" Oh how I wanted to be sarcastic and tell him no, I'm not sure, because I handed my three year old a cup and said go pee in this. Instead I told him, yes I am sure because I am the one who collected it. I wiped her first, I wore GLOVES and I ticked her off royal making her pee in a cup, oh, and did I mention she peed all over the floor of the bathroom in the process leaving me to clean it all up for you guys?? YES it was a clean catch. (yes, I can be a bit witchy at 1:30 am when my baby is sick and a "doctor" is questioning if I made sure I got a clean urine catch. The former EMT in me would NEVER have done less!) At that point he took off his mask (no one but him had ever worn one) and says "then she has a UTI because she has broken down nitrites in her urine."

FINALLY an answer. So they prescribe some antibiotics, give her a dose in the ER, give me the script and FINALLY at 2 am send us on our way. Unfortunately, BFF and I realize that we will be in NO condition to try and go to the pharmacy in the morning to get this script filled for her next dose. So we act like responsible adults and after a 45-60 min drive we get to the 24 hour pharmacy and get it filled (well, after a stop at the 24 hour dunkin donuts, come on now, the adults needed a little "prescription" too!!). And then we headed home. We finally arrived home at 3:15 am. I should have given her some motrin or tylenol then, but she was fever free and sound asleep.

She woke up this morning though with 105.5 again. *sigh* I quickly dosed her with her motrin, antibiotics, and her regular morning meds. That was all at around 10 am. It is now about 12:30 and she has a pretty much normal temp (just over 99 when I last checked :) ). But I will be giving her some tylenol momentarily just to keep it at bay for the day. I'll be going out shortly to get her some popsicles and maybe some gatorade. (she did NOT like Pedialyte!!!)

If she is not improving by Monday morning we will be back to the pediatrician for follow up. Actually, I suspect we are going anyway, but I have to make several phone calls first. I want to talk to her pedi, talk to her neurologist and find out if some of the side effects of her medications can make her more susceptible to UTI's because of the meds effects on her kidney's.

It can be so tough being a mom some days!! Bug is acting SO much better right now. She is trying to fold laundry. It is very cute. You can tell she is feeling better. I love seeing her happy and playful again (even if she's making a mess of the laundry!!!)

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Sick baby update

So after nearly 48 hours of a lethargic and feverish Bug, BFF made the decision that she needed to go to the doctor. Since she was home with her while I was at work, and she could see how she was feeling at that time, I support her decision to call for an appointment. She called me shortly after making the appointment to tell me when it was. I had to leave work early for it, but my daughter will always come first.

We saw one of the nurse practitioners today. I liked her very much. She understood and agreed with why BFF and I chose to NOT give tylenol today. We wanted to try and let her body fight it off. But with the weekend coming and her being my epileptic child, I knew I just couldn't risk it any longer.

The final call was a virus. NOT flu as she has NO symptoms of flu beyond the fever. A strep culture was done as a precaution though her throat looked fine. The NP gave us the go ahead to go to the Children's Hospital laboratory for her regular blood draw. She has to have blood draws on a regular basis for liver function, CBC's, and other things to make sure her medicine for her seizure's isn't harming her. I'd put it off because of the fever. And while we were headed over anyway, the NP added a urinalysis to rule out a UTI. That was the easy part.

Bug had a 102.9 Fever in the doctor's office. But she is fine now. She is playing with the girls and enjoying herself after some pizza. I am sure she will be back to lethargic and feverish in a few more hours, but I am enjoying this while I can. :)

Thank you for your prayers, please continue to pray for her. If it gets too high again we will be heading for the Children's Hospital ER.

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Sick baby

My poor Buggy is sick. She woke up yesterday lethargic and obviously not herself. I worked yesterday morning and BFF said Bug had taken a nap, but that other than being lethargic, she had been okay. Bug started looking more and more tired and wanted to be picked up, so I gave in and picked her up. Within seconds she was asleep on my shoulder. So I laid down on the couch with her. By the time BFF's DH got home and gave her a kiss on the forehead she was BROILING. I hadn't really noticed cuz it'd happened ON me.

He picked her up and I got the thermometer. 102-102.4 were the various measurements I got. Just depended on the side I measured. I was stunned. And a little worried I admit. Bug has epilepsy as you may recall, high fevers are a serious concern because even with the meds this can cause breakthrough seizures. And with a fever she is more likely to have a Grand Mal. I quickly texted BFF who wasn't at home, she had the van with the car seats in it. She needed to know what was going on, in case I needed her to come home. And then I got her some medicine. Her temp came down and we even managed to get her to eat some dinner.

We put her to bed. When it came time for BFF and I to go to sleep we did our nightly rounds, when we checked her and she was BOILING again. BFF got her out of bed and to my room (affectionatly known as the COLDEST room in the house) and I grabbed the tylenol. She was back to 101.4. We dosed her and stripped her to panties for about 15 min and got her down to under 101 pretty quick. So we let her go back to bed.

This morning, she was back to 101.0. *sigh* It's like we cannot win. More tylenol, and a careful watch. But she ate breakfast and her temp has come down and stayed down. So for now she seems okay. She is outside playing right now. We have an absolutely BEAUTIFUL December day. It's about 70 degrees, a bit of wind, but we are taking advantage of this weather!!!! LOL

I will keep you all posted on my baby Bug. :)

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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.

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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!!

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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) :)

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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.

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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!

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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.

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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.

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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.

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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.

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