Recap

So here's a little summary as to what's going on and what happened today. I'm bouncing our little muffin on my lap right now and have a bit of time to write.

Wednesday - Pedi appointment, Caleigh has the beginnings of an ear infection. We start a 10 day stretch of amoxicillin that night.

Thursday - Stool samples come back positive with blood. We go to GI appt. Started taking stool samples for c difficile, parasites & stool cultures. Caleigh started getting a yeast infection and liquid stools due to the amoxicillin. Picked up a glucometer to monitor Caleigh's blood sugar. Possible dumping syndrome suspected.

Friday - Caleigh didn't sleep. She was up all night stooling and in pain with the yeast infection. 7am rolled around and her blood sugar was 68. Started her feed, one hour later her blood sugar was 293. One hour after that it was 210. Called our GI doctor. A 2 week liquid anti-fungal was ordered to help the yeast. More strips and lancets were ordered for our glucometer. We loaded up a fussy, hurting little girl and headed to our nephrology appointment. Luckly for us the nephrology and endocrinology offices are in the same area. I checked in and then asked for the nurse that gave us the glucometer yesterday. They sent out a different nurse, but I told her all about what was going on and how we didn't have an appointment until the 16th. She confirmed that 293 and 210 were too high. She said that she would talk to the doctor and give me a call. So far I haven't heard anything. I will be calling again first thing Monday morning.

At our Nephrology appointment Caleigh's blood pressure was high...142/95 and then 105/75. We are shooting for nothing higher than 100/57. The nurse gave us the right size bp cuff....an angel as far as I'm concerned. I've been fighting with home health for months. Apparently, the medicine that Caleigh was on only really lasts for about 4 hours. We were only giving it to her at 7pm and she would literally pass out. This may explain her sudden waking in the middle of the night too. So for Lord knows how long Caleigh has been having high blood pressure. We've switched to a new medicine tonight and we have the right size cuff. I'm going to start recording blood pressures twice a day and we are to go back to Nephrology in one week.

I was supposed to have a hair appointment this afternoon. Eric was going to take Caleigh out to his parents while I did that. We ended up canceling, hanging out at the pharmacy for an hour and coming home. Caleigh's bottom is so incrediably red it's unreal. We've started the anti-fungal through her g-button. We've started putting lotrimin on her bottom and I'm about to give her a bath in apple cider vinegar. Hopefully this thing will go away. This afternoon, while Caleigh was screaming because her bottom hurts, and I had lost count of the number of diapers we've been through......I was close to just taking Caleigh to the ER. All the doctors are there, I don't have to call and call to get answers....it was a fleeting thought. Not doing it unless it's absolutely necessary. We are just tired and hating that she is hurting. It stinks that it is the weekend. All our favorite nurses aren't there to answer my calls. Gosh we are spoiled. Sometimes it helps to be chronic....but most of the time it sucks.

High

Caleigh's glucose this morning before her feed was 68....normal

One hour into her feed....293! Yikes, I knew it.

Waiting on our doctor to find out what to do....
Please keep Caleigh in your prayers.

Always More

Caleigh has been working on sitting and doing great. She has even figured out how to fold herself all the way down so that she can chew on her toes. It's really cute and she gets tickled when I 'catch' her doing it.

All the happiness was easily overshadowed by a cranky little girl on Tuesday and Wednesday. Something was off so I called our pedi and got an appointment. Turns out Caleigh has the beginnings of an ear infection. This is the second one that she has had and the second time we caught it before it got bad. She wasn't running a fever and she can't pull on her ear like regular kids do, but I had a feeling our little girl didn't feel well. So we started an antibiotic and already Caleigh has a nice yeast infection brewing. Oh well, trading one for the other I guess. She seems to be feeling better.

This past weekend's test results didn't turn out great. Blood work was good, but the stool samples came back positive for blood. We talked to our GI and went in to see him this afternoon. He did a stool test there in the office and it immediately showed that there is blood in her stool. Usually the test takes 1 minute to show up, but Caleigh's turned right away. Oddly enough her stool is back to a light brown. So we were sent home with more vials to test her stool for c difficile, parasites and an overall stool culture. All of these, if positive, can be treated at home with medicine.

Now if they come back negative we've got a whole new ordeal on our hands. The tentative plans are to do a scope, both lower and upper, to check for inflammation and bleeding. Also they will check her fundoplacation to see if there are any tears or hernias. My bet is on the fundo. Anyone who has been around when Caleigh starts retching will know why I'm placing my bets on this one. I don't know how anything could hold up to that. I hope not, but right now it seems the most logical.

On to the next thing, it's a bit confusing because we are just trying to figure it out, so bare with me. For the past few months with every tube feeding Caleigh has been acting out of sorts. By this I mean she starts off happy, ends up retching at least once and then starts acting confused, lethargic, sweating, can barely hold herself up, cries and wants to be held. Sometimes her eyes roll around too. Her normal spastic muscles turn to jello. It freaks me out honestly. The 7am feed is the worst of all and it takes her all morning to recover from whatever it is. So my original thoughts were that something is going on with her blood sugar. I've even had to schedule her naps and feedings at the same time because I can't keep her awake. I took her feeds down to 4.5 times a day and we have slowly been weaning the 10pm feed. We've changed her formula in hopes that it just wasn't agreeing with her. Along with these symptoms Caleigh has a bowel movement at least once if not twice during each feed. Early last month while trying to figure this out I made an Endocrinologist appointment. It's not until the 16th of June, I figured we haven't seen one, why not add it to our list! So with further research I looked into the types of Dumping Syndrome that can cause glucose problems. I brought all my research to our GI today and I think we may be getting somewhere. Caleigh has all the classic signs. Sweating, fatigue, decreased consciousness, stomach growling, diarrhea...the list goes on and on. We ran by the Endocrinologist office and picked up a glucometer on our way home today. We are going to check Caleigh's blood sugar right before she eats and then an hour after. We'll probably do this for a week to get some good readings down and maybe find some answers. I think the mystery is still unfolding but it's a place to start anyways.

Tomorrow morning we have an appointment with Nephrology in an attempt to figure out Caleigh's blood pressure...again. I'm bringing our BP machine and cuffs with us. I don't believe that the cuffs that we have actually fit Caleigh and it really does make a difference. I don't want Caleigh on the medicine if she really doesn't need it. Through my research, if Caleigh does have a dumping syndrome it could be causing the high blood pressure IF she is having high blood pressure.

Caleigh always keeps us on our toes and running in about 6 different directions at once. Never a dull day...

All by herself

That's right sister....Caleigh is sitting unassisted!

She was so proud of herself. I kept telling her what a big girl she is and how wonderful sitting can be. I didn't time her and I'm kinda sad I didn't, but after I got done looking at the photos, that I had to step back across the room to take; I remembered the pics have a time to them. So I pulled up photoshop and there it was....a minute and a half which was probably about 2 minutes because I didn't start taking the photos right away. I'm delighted to see this progress and I can't wait to try again in the morning.

So what made the difference this week? Well, tomorrow will be one week on the reduced Keppra dosage. It's just a little but we can really tell a difference in Caleigh's head control. Her head used to bop all over the place and now she can hold it steady for longer periods of time. We have one more week on this dosage and then we will inch down again.

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About 3-4 weeks back Caleigh's g-button broke in the middle of the night. Instead of going to the ER at 3am we put a Mic-Key button in that we had extra. Right about that time is when we were putting in the new floors and Caleigh started hating tummy time. On Thursday we finally got our AMT mini-one button from our home health company and we immediately put it in. The next day it was like I had a completely different daughter on my hands! Tummy time was a breeze and the area around the button is slowly healing from the Mic-Key button induced granulation tissue. Caleigh doesn't mind being on the floor now and the moral to this story is.....get out of bed and make the trip to the ER at 3am....it's worth it. What a difference a button makes!

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The day after we changed Caleigh's button to the mini-one, she started having black stools. Black stools usually mean blood when the consistency is normal. So I called our doc and they ordered some labs and a stool sample to see if it was in fact blood. Yesterday morning we went and did the blood work and they sent us home with a nice little stool sample kit. It may be from the button being changed out and there being old blood in her system. Although it's been going on for 4 days now. It makes me think otherwise. Caleigh isn't acting any different, but we don't want to miss anything. Hopefully we will have the results some time early next week.

Have a fun and safe Memorial Day!

Behavior..Caleigh Style

It's wonderful when the child that was once labeled, too hastily might I add, "mentally retarded" & "unable to understand" shows a visible sign that she comprehends what is asked of her. We of course know that Caleigh understands everything. She's a smart cookie. I was recently asked how we know that she understands the word bath. I told the lady that she gets excited about it. That's not exactly proof in the world of brain injured children so this new development is ground breaking in my book. She also pushes up on her arms when we ask her to and if we ask her to hold her head up, she does so. Those things aren't always necessary so it's hard to show. That being said we ask Caleigh to do a lot of things and she doesn't respond yet. We know she understands and so we just keep on asking.



This is a fairly recent development with Caleigh. She seems so frustrated not being able to communicate with us. She seems angry. Usually when she is having one of these 'fits' she wants something. I guess it's her way of showing displeasure with a situation. We get this a lot lately. The arching, the screaming and a hint of growling. It's not all smiles and buttercups around the Gray's house. It's frustrating for Eric and I as well. We long for her to be able to communicate with us. Now that I think about it....this is her communicating with us.

With Caleigh's newly developed frustration comes a new word added to her vocabulary. "NO." I have to hold her in my arms, tell her no, sometimes shake my finger while saying it. Talk to her in a stern voice. The conversation usually goes something like: Caleigh I know you are unhappy with _____ (usually I know what it is) and I'm going to try to make it better and get you what you need. So with Caleigh being the genius that she is, she has turned this scenario to her favor. The main examples I have are tummy time on the floor, sleeping and trips down the incline ramp. She will throw these fits when she doesn't want to do something because she knows that I or someone else will pick her up. I've tried letting her 'cry it out' with no avail. When she pulls one of these stunts the conversation changes to "No Caleigh, your a big girl and you can handle it." I'm not sure if this is a typical, almost two year old defiance or if it is brain related. What do you think?

Wordless Wednesday

Justa swinging


Garden a'la Gray

And the results are

So much has happened since we went in to do the EEG for seizures. The actual EEG went wonderfully. Caleigh was on her best behavior. She stayed awake long enough to get that part of the test. She handled the flashing light portion and fell asleep as soon as it was done. They got great readings while she was asleep. Usually Caleigh is so angry and crying by the time they get all the sensors on her that she moves too much for them to get much. So this was perfect. Anyone that has been around Caleigh notices that she shudders some. Almost like a cold chill. We've questioned this before and did an EEG to test for Infantile Spasms back in June of '08. It came back fine and we were told it is probably sensory related. I was excited, if that's the word for it, that Caleigh actually had a few of these 'episodes' during the test. So I was interested to see if it came back as seizure activity. We managed to squeeze a little info out of the tech. All she really said is that "there was still some activity and she would let the doctor look at it." I left the appointment kinda bummed but also happy that we did the EEG now instead of in September because I would have been wondering the whole time.



Flash forward to this past Friday when I got a call from the Neuro office. Here's how the conversation went....

me: Hello

nurse: Mrs. Gray

me: yes....

nurse: hi, I'm calling to give you the results of Caleigh's EEG

me: OK

nurse: it came back abnormal, there is spiking activity consistent with the possibility of seizures

me: ok, how many did she have

nurse: oh, she didn't have any seizures during the test

me: Really?

nurse: can you tell me what her symptoms are?

me: she isn't having any symptoms...that's why we wanted to do the test and our doctor told us that her EEG will always be abnormal

nurse: So would you like to change her medicine?

me: why? You just told me that she didn't have any seizures

nurse: yes, but if you feel like her medicine isn't working we can try something else

me: no, the whole point was to get her off the Keppra. She's already delayed and the sun sensitivity is unbearable.
nurse: so what your telling me is that you still want to wean her off the medication?

me: yes, that's what I'm saying. If she does have a seizure we will look at the options then.
nurse: OK, I'll get together with your doctor and his nurse and see what they say. Someone will call you on Monday

I got off the phone confused. Why did she want to change her med? Huh?

Super Flash Forward to today when our neuro's nurse called me. All of that confusion and wrong information led us to actually weaning Caleigh off of her seizure medicine. Bye Bye Keppra. We are going to go slow. Caleigh gets 2 ml twice a day. We are going to take away 1 ml every two weeks. This means that she will be off the med in 2 months. I am absolutely giddy inside. We are going to start in the morning. Thanks for all the prayers and well wishes...they did the trick once again! Lord don't let those seizures come back!



Friday was Eric's 29th birthday and Caleigh's 21st month. Eric and I took Caleigh to her Mimi & Pop's for the night. This was the first time that Caleigh spent the night with anyone and it was the first time we came home to an empty quiet house. We had reservations at Texas de Brazil and then went to a good friends wedding reception. Eric and I had a wonderful time. I wasn't as sad about not having Caleigh at home as I thought I would. It's probably because my body is craving sleep. Caleigh hasn't been sleeping well at all. In fact, we put her back in her crib to see if that was the problem but it didn't seem to make a difference.

The night at Mimi's wasn't any different. She was up and ready to play all night. We picked her up early Saturday morning and then stopped by our friend Jen's to visit. We made it home, had some friends over and went to bed late again only to wake up in the middle of the night with little miss thing.


Caleigh finally got that extra top tooth in. Goodbye to those precious gummy smiles. Hello to big girl grins.

Sunday was a nice relaxing day. We woke up, Eric made pancakes...yum. Caleigh and I got ready and went to our play-date at Kendall's house. Kendall, Jude & Caleigh consisted of this play group and I for one had a great time. We swapped equipment, therapy and doctor stories and played with the kids. It was nice to get out and talk to someone who understands. Caleigh is a little older than Kendall and Jude. I remember where we were at when Caleigh was their age. It's amazing how incredibly slow everything feels. The milestones come so little one by one that it feels like it will never happen. After looking back and thinking about Caleigh, I am truly amazed at how much she has done. Things still feel slow going and I'm sure that won't change anytime soon. It was nice to know that we aren't the only ones out there though. We came home to Eric cooking in his new birthday smoker and cleaning out the garage. It was a nice afternoon spent on the back porch.

Somewhere during all of this we switched Caleigh to Elecare formula instead of the Peptamen Jr. she was on. Her stool is amazing now and there seems to be a lot less of it. She hasn't been on it for a week yet but she seems to be feeling better during feeds.

Ok, so that was the weekend. Stay tuned for a great video and a little lesson on Caleigh's behavior....

Spring Makeover

I freshened up the blog tonight in an effort to jump into Spring, but since I got sunburned sitting outside, maybe I should celebrate summer instead? Either way, enjoy the new look.

If you have time tomorrow morning, please say a little prayer for no seizures during Caleigh's EEG.

Humble Video

I received this video for Mother's Day from a dear friend.

I'm honored. What do you think? :-)

Happy Mother's Day

Such a Long Week

The hard floors are down. Caleigh's back in her own bedroom. The Gray family is officially exhausted.

As soon as we moved Caleigh back into our bedroom for the renovation she decided to stop sleeping. I swear we haven't slept in 6 days. There was one night that she made it until 5:30am and that's it. The general schedule lately has been to wake up around 1 and stay up till 4-5am. So with all the work and disruption going on at the house we are all very tired. I'm hoping that once we get back to our schedule everything will calm down some. Last night was the first night back in her bedroom and she did do better, but we we're definitely up for a few hours.

On Tuesday we had an appointment with Monkey Mouths. This is a new speech and feeding therapy place that I found. The therapists that work there have so much experience and they use a variety of methods that I'm interested in. The place is so dang cute. They must of had a great decorator. Caleigh's evaluation lasted for about two hours. The therapist thinks that Caleigh has an aversion to pressure and movement. So when the spoon, or whatever we use to feed her, goes in her mouth she is scared. Then the food starts to move around and that makes the sensation worse. It was something I hadn't heard before. So even though it brings on new challenges it was nice to have an answer for what's been going on. She gave me several stretches to start doing and suggested not feeding Caleigh until her muscles are strong enough and her aversion is better. We can do tiny tastes of food and liquid, but only using a small straw to release it into her cheek. She basically thinks that Caleigh isn't sure what to do once something goes in her mouth. Another great thing about Monkey Mouths is that they also do Hippotherapy. This is therapeutic horse riding with a purpose of a specific goal, i.e. head control. Once Caleigh turns 2 she can start this therapy. So we are going to drop our home speech therapist and start going to Monkey Mouths twice a week and when we start Hippotherapy we will go three times a week. It's about a 30 minute drive from our house, but at this point I just want Caleigh to be able to eat and with all the stretches hopefully she will be able to speak as well. I asked the therapist if she thought Caleigh would be able to eat by mouth and she said 'yes.' So I'm hopeful and happy to have a plan instead of the 'keep doing what your doing' senerio.

On Thursday we took Caleigh for a renal ultrasound. This was to check on her kidneys and to see if there is a reason for her high blood pressure. Caleigh did really well during the long ultrasound. I had to pull out every kiddy song imaginable and then made some up, but it kept her still. Her bowel dilation and gas made it hard to see the arteries which was what I was really interested in. If anything in her abdomen is compressing the renal vein then that could be a cause for the hypertension. Her kidneys looked great and had grown wonderfully since the last time we did an ultrasound. I'm not sure what our next step will be. I'm leaning towards an Endocrinologist to check certain hormones that can cause high blood pressure. We haven't seen one of those yet anyways...why not add that to our list of doctors and specialists! Caleigh also has a body odor and no one can tell us why. Maybe hormones, maybe more of the 'I don't knows'..... So that's on my to do list for this coming week.



On the airplane to and from Philly I finished the book BLUE SKY JULY: A Mother's Story of Hope and Healing. It was amazing, inspirational, and loving. It made me cry. It made me proud. It made me stop and think about our situation and how it really isn't that different.

Set between the summers of 1998 and 2005, Blue Sky July follows the story of Nia Wyn, a mother who battled against impossible odds to heal her son Joe, who was diagnosed with cerebral palsy soon after he was born. Told by doctors that he would never walk, talk, see, or even recognize her, Wyn devoted her every waking moment to exploring alternative treatments. Through an intimate portrayal of her day-to-day interactions with her son and partner—as well as her own internal struggles, perceptions, and celebrations—Wyn shares her own uplifting story of resilience in the face of tragedy.

If you have a child with special needs this book is a must read, but this book is also wonderful for those trying to understand and educate. I'm going to start re-reading it again soon.

Here's another tip from The Institutes: Buy a Hepa Filter to clean the air in your home. I bought this one a Target...
It really helped with the dust while we were pulling up marble and carpet. It now lives in Caleigh's room. They suggested a Hepa filter over an Ion filter because there just isn't enough research on the Ion filters yet.

The Floor as a Way of Life

What I learned at The Institutes...Part 1

Implementing everything taught at the lecture series has been quite the task for us. Baby steps for sure. So to start with, the floor is now a way of life for Caleigh. No bouncy seats, no standers, no chairs unless feeding or reading. The staff at the Institutes believe that everything 'baby' that we as a society feel like we have to buy for our little ones is actually setting our children back in development. Think about it...our kids are hardly ever on the floor. They are always being entertained by something. Did you know that a newborn, if given the chance, will crawl up their mother's belly to breastfeed directly after birth. Then what do we do? Wrap'em up and never put them down. They did some very interesting research with tribes in Africa and Alaska in the 60's. I won't go into it here, but it was really interesting.
So by floor as a way of life, I don't mean flat on the back. If you put a turtle on their back what would they do? Caleigh will have to be on her tummy from the time she wakes to the time she sleeps and even then she will be on the floor. For tactile stimulation and depth perception Caleigh will need to sleep on her tummy on the hard floor (with yoga mat) until she is able to walk on her own. This is very important in the process of development and vision. Don't feel bad for her.....the Japanese sleep on the floor, and have for centuries, and they are just fine, and very smart might I add! She will need to be in a onesie with arms and legs touching the hard surface for the best tactile stimulation. So with that said, Eric and I have removed our carpet in the living room, the tile in the entry and hall and the carpet in Caleigh's room. Creeping or Crawling on carpet is almost impossible if you are having motor problems. Trust me it's hard without motor problems! At the conference they had us crawl across the floor, it was difficult. So this weekend we are putting down laminate hard wood in those areas to help ease the process for her. I've also called and moved up our EEG appointment to see if Caleigh really needs her seizure med. Our original appointment was for September, but why wait. The Institutes is completely against anti-convulsants and on their intensive program detoxes 99% of the children they see. I learned so much about seizures and the brain. The thought behind seizure meds is to sedate the brain and just maybe that will stop the seizures. Often that doesn't happen so doctors will continue to stack one med on top of the other sedating the child even further. I also learned that Caleigh's light sensitivity is due to the seizure medicine and I'm excited to see how she does off of it. It was really fascinating. They believe that seizures are due to a lack of oxygen. Seizures are in place to warn us about something gone wrong in our body. Kinda like a fever or vomiting does. Everything they said about seizures made so much sense. When we found out that Caleigh was having seizures she was breathing so poorly and even stopped breathing in the car as some of you will remember. She was constantly a lovely shade of gray/blue. All of this was due to her abdominal distention pushing on her lungs. The angle of the carseat didn't help. Children with brain injuries often don't breathe well too. So how do they fix this? The Institutes has a great respiratory program. Your doctor will have to help oversee it. I won't go into it here, but I will say that it all adds up in my head and we hope to start this stage soon.

If you want more information about the Institutes you can read the book "What to Do About Your Brain Injuried Child"