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January 31, 2007

Chick-fil-A Fundraiser Scheduled For February 17th

With your help and your appetite we can raise big dollars for Taegan.

The Greenwood Chick-fil-A on St. Road 135 in front of the Meijer will be having a fundraiser to benefit Taegan on Saturday, February 17th from 6:30am to 10pm.

You may dine in or stop by the drive-thru. Be sure to tell them you'd like the coupon for Taegan's fundraiser if you haven't gotten one from me ahead of time. The cashier will need to write the total amount spent at the bottom of the coupon. Twenty percent of what you spend goes directly to Taegan's Benefit.

Taegan will make an appearance at some point, probably for lunch, and possibly dinner. We'll have to see how she sleeps the night before etc.

Be sure to tell your friends and family to bring a big appetite to make a BIG difference in the life of a child.

January 29, 2007

Change of Appointment etc.

Just an FYI: The neuropsychologist's office called last week to cancel Taegan's February 5th appointment. She was to have 2 appointments that day in the same medical facility, one with the neuropsychologist and another with the physiatrist. It's a bit of a drive to their offices, so I had scheduled them for the same day. After a lot of schedule juggling, both appointments are now rescheduled for February 26th.

Taegan's ophthalmologist appt. is still scheduled for February 7th and the ENT Dr. is still on February 8th.

Taegan continues to struggle with her sleeping. Her typical sleep pattern has been to sleep unsoundly for 3-4 hours, and then she will be awake, sometimes for 2 and 3 hours before falling asleep again.

The other night, she awoke with a shrill scream that caused me to bolt out of bed practically before my eyes opened! She was having what appeared to be a muscle cramp in her leg. It was her left leg and she was wearing her night splint at the time. When I got to her, her left leg was tremoring and she was grabbing it. I had adjusted the splint the night before, and increased the tension by one increment. (The tension goes from 1-5.) It is set on 2 presently. The orthotist had suggested I increase it one increment per week. The number 2 setting is only slightly bent, so I was quite shocked that it could cause such a reaction. Of course she should be up to 5 by now, but she had all that trouble with being able to tolerate it because of how sweaty her foot would get. We have special socks that she wears with them that have helped reduce the sweating significantly. But, now it seems there is an issue with muscle cramping.

When I meet with the physiatrist, I am going to ask about Botox injections for her high muscle tone in her left leg. Another mother of a CP child advised me to ask for Valium for Taegan if we went ahead and did the serial casting. She said the muscle cramping was almost unbearable for her son when he was serial casted, and that they had to use high doses of Valium to manage his pain. I just cringe when I hear these stories.... and it makes my heart ache even more for my little girl who has to go through all these painful things. She should be enjoying being a child, and exploring, running, jumping, climbing etc. etc. All the things that healthy 2 1/2 year olds enjoy. I still have faith that one day Taegan will do all those things, and I hope that day comes as a result of HBO treatments.

I have been keeping a food journal for Taegan to see if I cannot identify some sort of 'trigger' for these sleep disturbances, but so far, nothing is jumping out as the cause. It may not be a food cause at all. I'm trying to brainstorm all possibilities. I'm hoping after her ENT appointment, there might be a more clear picture painted....

Taegan has been back on Prevacid for approximately 3 weeks now. It seems to have helped her reflux, although she still is having it, just not as severely as she did prior to beginning the Prevacid.

Some good news.... Taegan started saying "Grandma" and "Grandpa" this week. It sounds like "Gamma" and "Gampa" but it's definitely music to our ears! She also said "Taegan" last week as I was spelling her name for her on paper. I got to "TAE" and she quipped, "TAEGAN!" as if she knew what I was spelling. Perhaps she does!? You never know with her...our little puzzle. I just love her adorable voice when she talks.

In other news... Taegan enjoyed her first 'snow experience' last week. She helped build a snowman with "Gamma" and mommy. Her favorite thing to do was EAT the snow. She loved it, except for when the snow touched her skin...she got really upset a few times when it got on her arms where her mittens weren't covering her skin. It was a hoot watching her trying to walk in her snow boots (as if she doesn't have enough trouble trying to walk in regular shoes w/braces!)
You can view some of her snow pictures on her myspace page, which is:

Hope everyone is staying healthy and warm this winter!!!

January 18, 2007

Therapy Update, etc.

Taegan's therapy meetings went really well this week and last. She again qualifies for services through our states early intervention program, called First Steps.

Her Physical Therapy sessions were increased to 75 minutes per visit, and her Developmental Therapy sessions were increased to 1x/wk instead of 2x/month. Also, Occupational Therapy services will be 2x/month. Nutrition services will stay at 1x/month, and Speech Therapy remains at 1x/week as well. She's still receiving CranioSacral Therapy weekly as well (privately).

For her OT sessions, she will be able to receive that through the same facility where she is doing private Physical Therapy (in addition to First Steps Physical Therapy). She will be able to do hippotherapy during her OT treatments as well, which I am thrilled about, and I'm sure Taegan will be excited, as she absolutely loves having therapy there. She just lights up and participates in therapy so well while she's on the horse.

A representative from our local school district met with me as well and explained a bit about how the special needs preschool program works. Taegan will be transitioning out of the First Steps program in June when she turns 3, and will attend the special needs preschool program beginning in August.

Even though I worked in a special needs preschool setting for 5 years, it is still scary to think about MY CHILD going off to school! It seems like it was yesterday that I brought her home from her month long NICU stay, weighing 5lbs 5oz. Just thinking about how much she's grown brings a tear to my eye.

I'm pleased with how her therapies are going... it's a slow process with Taegan, but I know we'll get there. If we could get her tone issues resolved, I know she'd just take off in her PT sessions. I am anxious to see how HBO treatments affect not only her muscle tone, but her SPEECH as well. I've read many reports about non-verbal children speaking after ONE session of HBO treatment. So yeah, I have high hopes.... but I'm also realistic, and know that if it doesn't happen for Taegan that way, it's ok. It will happen when she's ready and when it's supposed to happen.

It's just so frustrating for me (and I'm sure for Taegan as well) when she cannot communicate her needs. She had a really rough couple of nights this week. One night, she was up crying every few minutes until 7:40am! She kept saying "Owie" and rocking herself in her crib. I tried everything I knew to help her... and nothing could comfort her enough to stop her tears. I asked her where it hurt... where was the owie.... in many different ways. "Show mommy your owie Taegan..." Nothing. "Tell mommy yes or no.. Does your tummy hurt? Does your head hurt?" Nothing. "Touch where it hurts Taegan." Nothing. "Shake your head yes or no Taegan.... " Nada. She is able to shake her head no, but isn't consistent with that unless she adamantly does not want something you're offering or suggesting (meal times come to mind here!)

Since she's started back on the Prevacid(to help manager her reflux) last week, she's developed an aversion to medicines. That includes all flavors of Tylenol. You'd think she was being stuck with a needle or something the way she fusses while getting her to take that Prevacid! It's not even that bad of a taste!

So, now apparently, she associates all 'medicine' with the Prevacid experience, and it's like a full fledged wrestling match trying to get her to swallow it. Oy!! So, here it is, 3am the other night, and I'm trying to get her to take some Tylenol, hoping that whatever it was that was ailing her would be eased with the Tylenol. It didn't seem to help any... It's times like those that I wish I were a mind reader. It's frustrating and tears at my heart to see her in pain, especially since she cannot tell me what her needs are, ever!

We've been working really hard with this in Speech Therapy. Hopefully she'll be able to communicate her needs one day.

I've scheduled an appointment with a pediatric ENT out on the west side of Indy for February 8th. I suspect he'll want to remove her tonsils and adenoids to see if that corrects her sleep apnea. Sedation is so scary, in my opinion... especially for kiddos so young. But if it needs done, we'll do it.

In other news... we're about $1,400 shy of reaching our goal of $4,400 for Taegan to be able to receive the hyperbaric oxygen treatments.

More updates to follow soon....

January 6, 2007

Upcoming Appointments Etc.

Taegan has a follow-up appointment with the physiatrist on February 5th. She will be determining if the night splint is effectively controlling Taegan's muscle tone in her left foot, or if we should try a more aggressive approach like serial casting and Botox injections.

Also, she wants to go over past blood work/tests Taegan's had done (birth-present), as she's concerned about a possible genetic disorder. No specific disorders were mentioned, only that there are some that fit the characteristics of Taegan's bowel problems, as well as some of her physical features.

The physiatrist is the doctor who ordered the PH probe and EEG monitoring be included in the sleep study, which of course was not implemented. So, I'm not sure whether we'll have to do these tests separately or not.

I believe I am supposed to be scheduling an appointment with a neurologist for EEG testing as well... Also, hip X-rays were discussed at our previous meeting, but no order was written for it.

She will also have her first appointment with a neuropsychologist this day as well, although I think the appointment is more geared towards the parent. I believe he will be discussing possible behavioral issues that could arise that are characteristic of cerebral palsy diagnosis, and how to best handle them if/when they arise.

On February 7th, she will have an appointment with the pediatric ophthalmologist. She's seen him 3 previous times, all in her first year of life. With Taegan's PVL diagnosis, it is common to have vision problems. Some PVL children have cortical blindness, retinopathy, cataracts, and a whole plethora of other vision issues. Thankfully, Taegan only has an astigmatism in both eyes (as of her last eye appt. at 12 months old).

Taegan hasn't been able to wear her night splint consistently due to the excessive sweating issue. The orthotist ordered two types of special sweat absorbent socks that just arrived Friday, so we will be trying those out and hoping that solves the problem.

Since the last update on December 2nd, Taegan has had another cold and also a stomach virus. She's currently fighting off the beginnings of yet another cold... in the sneezing/itchy nose stage at the present time. I have no idea where the exposure to these illnesses is coming from, as I am careful where I take her during RSV season (October-May). This is the first year we're not living like hermits during RSV season. She doesn't have to receive the RSV shots monthly anymore, thank goodness. They were nearly $6,000 per shot!!! She does have contact with other children and shared toys at the facility where she has her hippotherapy once a week. That could be where she's coming into contact with all these lovely germs... also, her immune system is still fragile, as she hasn't built up much immunity to all the germs that are out there. Other than that, she makes the occasional trip to the grocery store etc. Go figure, I guess it's inevitable.

Overall, she's just not been her normal, pleasant self for about 3 months. She's cranky and just doesn't act like she feels well. I suspect she's having reflux issues again. She continues to have bowel issues, despite being on a prescription medication for constipation for the past year.

She has also struggled with eating, and has progressively gotten more finicky with what and when she will eat. Most days, I rely on the Pediasure supplement to meet her nutritional requirements.

At Taegan's two year pediatrician visit, she weighed 26 pounds. Six months later, she has only gained a few OUNCES. She is in the bottom 25th percentile for height and weight for her age.

In mid December she was re-evaluated by the nutritionist/dietitian and again qualifies for services. She will be seen once a month.

Taegan's sleep hasn't improved... she continues to sleep for 2-3 hour stretches most nights, and is then up for hours at a time. She just lies in her crib babbling and crawling around, and singing to herself, with an occasional holler here and there. Most days, she refuses her nap. I still make her lay down for one, and get her up after 90 minutes if she's not sleeping. I don't understand how she can be so tired, and yet not sleep! This is something I will discuss with the physiatrist again in February. (as I type this entry at 4:03 AM, she has been up for the past 70 minutes. She didn't fall asleep until close to midnight tonight as there's her 3 hour stretch!)

The lack of sleep is carrying over into all of Taegan's therapy sessions. She is so tired, she is not wanting to participate. She's also very grouchy as a result... which I understand, because I am too when I am sleep deprived. So, overall, Taegan and I have been a pretty grumpy duo.

January 11th Taegan will be re-evaluated by the Occupational Therapist, Physical Therapist, Developmental Therapist, and Speech Therapist by the early intervention team here in our state. This is to make sure she still qualifies for services (which she's entitled to until she is 3 yrs old.) She will definitely qualify for services, as she's still very delayed in all areas. They call that "globally delayed."

On January 17th, all of her current therapists and her therapy service coordinator will meet with me and discuss the results from the evaluation the week prior. We will then write new goals for each therapy, and a time line in which we hope they will be achieved. Also, a teacher from the school system will be coming out to the house to discuss placing Taegan into the special needs preschool program in our district for August, 2007.

I think that's it as far as upcoming appointments are concerned... Hopefully the ENT appointment will be before February!!!

Sleep Study Ordeal & Results

Hello everyone... Hope you all had a wonderful holiday season and that many blessings come your way in 2007. The holidays have kept us busy, so my apologies for not keeping this site better updated.

Taegan finally had her sleep study at the children's hospital (which shall remain nameless) here in Indianapolis on December 19th. It was one of the most terrible medical experiences I've been through with Taegan since her NICU days... Suffice it to say, I will be writing the CEO of the hospital a detailed letter explaining why I will not be returning to their hospital for future medical care for my daughter.

It isn't just this particular experience I will be referencing, but every appointment, every hospitalization, and every encounter we've ever had with this hospital has been an unpleasant experience. I know you're thinking, "How can any trip to the hospital be a 'pleasant' experience?" I'm referring to the way we were treated, the professionalism, or lack thereof, and overall competence/incompetence.

When we arrived, they acted as if they had no idea we were scheduled to be there. No surprise there really, since they canceled our previous appt. 40 minutes before it was supposed to start, saying they had 'overbooked' the sleep lab that night.

When I called to reschedule, they scheduled me on 2 different nights while on the phone, changing between the two dates several times before deciding on the date. What is that all about!? They were also not very nice about me having to reschedule it, when it was their mistake for overbooking.

Well, unfortunately, Taegan caught a bad cold the week of the rescheduled sleep study, and *I* had to cancel that appointment. I rescheduled at that time as well, and again was given 'attitude' for canceling.

The lady on the phone remarked, 'How many times have you canceled now?' I should've gotten a clue and just said "Never mind...we'll go somewhere else." But I wasn't aware of any other hospital that did sleep study testing on pediatric patients aside from the children's hospital.

So, they found us a room, and told me to dress Taegan in her pajamas and put her in the crib. As I was dressing her, I noticed the sheets on the crib were soiled! They had what appeared to be dried mucous on them!

Twenty minutes later when someone returned to the room, I requested clean sheets be put on the crib, and pointed out the soiled spot. The employee did not change the sheets, but folded them down and tucked them under the mattress. I think my eyes were the size of saucers...

She said it would be fine... I said "I don't want my daughter sleeping on dirty sheets. She still puts everything in her mouth!" The lady assured me that she wouldn't be able to get the sheets in her mouth because she wouldn't be able to move around in the bed. What!? How was that an appropriate answer?

The night progressively got worse from here...

Taegan was supposed to have a PH probe test(measures acid reflux) as well as an EEG (checks for seizure activity) during the sleep study testing. I faxed the order to the sleep lab 3 weeks prior to our appointment, and even called to verify that they received it. The night of the study, there was no PH probe placed nor was their an EEG performed.

I questioned the person running the sleep study (I have no idea if she was a nurse or a technician, as she wore no name tag and did not identify herself... in hindsight, I should've asked for her name as well as the other rude people I dealt with that night!) and the lady assured me that "The most comprehensive tests will be performed on your daughter during the sleep study."

Well, that's all fine and good, but, where is the PH PROBE?? She tried to tell me that the "nasal cannula" would be placed in her nose last (as she was hooking up all the other wires, this conversation was taking place.) I suppose she thought by throwing out some medical terms like 'nasal cannula,' it would reassure me that they've got it all under control and that they know what they're doing. Unfortunately for her, she didn't know that I work in the medical field and am very well aware of what a nasal cannula is and also what a PH probe is and how it is to be inserted into the nose.

I questioned her further, and she simply stopped talking to me! I showed her the prescription that I had in my possession stating Taegan was to have a PH probe as well as an EEG and explained that it had been faxed 3 weeks prior... she just said that they have all the information they need, and all the tests were going to be run. I then told her I wanted to speak to whomever was in charge. Again was ignored...

All the while, Taegan was being hooked up with electrodes and being wrapped up like a mummy. The only thing you could see on her face was her nose and eyes. No cheeks, no chin, no ears, no hair etc. They put 'angel wings' on her arms that prevented her from bending them at the elbow so that she couldn't pull the wires off. This made Taegan extremely upset. I did my best to calm her, stroking the bridge of her that was the only exposed skin on her face!

What followed were several hours of crying... and coughing, and more crying... She cried so much that she was becoming congested in her lungs from all the mucous draining, I'm sure. Taegan was so exhausted before the test even began, I thought for sure she'd sleep despite being wrapped up like a mummy. No... she just kept crying... wouldn't keep her pacifier in her mouth, or take any milk etc. I tried singing to her etc. Everything I could think of to comfort her (as I could not hold her... she was in a 'crib' which looked rather like a cage, and I couldn't fit my arm through the slats.) I tried ignoring her... figuring she's got to stop crying at some point! (This began at 9pm by the way.)

Eventually, they asked me to step out of the room, and wait outside. So I did. There was a chair sitting out there, so naturally I sat there. Twenty minutes or so passed, and after several unusual stares from various staff members, I was asked to leave the area. I was told I couldn't sit there (even though there was a chair there.. I guess for decoration, I don't know!?) because of patient confidentiality. Okay?! I simply did what I was told... to wait outside the room..

They shuttled me off down the hall to the 'parent lounge.' I said I did not wish to sit in there, I wanted to stay in the room with my daughter. (They even tell you that you can sleep in the room with your child, and there is a fold out chair bed in there for the parent to sleep on). They said they felt Taegan would do better if I wasn't in there. They told me I could sleep in the lounge. I declined, and said I wanted to be notified when she was asleep, and at that time I would go back into the room to sleep there. This was 10:50pm.

At 1:10am, one of the lab workers came into the lounge and seemed to be irritated. She motioned for me to come with her, and I asked what was wrong. She told me that Taegan would not stop crying, and they needed me to calm her down. I asked if she'd been crying this whole time, and she said "yeah, pretty much." Nice.

Before I even entered Taegan's room, I could hear her crying and saying "Mommy! Mommy!" as she cried. (She rarely does this... only when she has a belly ache or something is wrong do I ever hear her cry my name.) I went to her side and slid the railing down and she tried to reach for me, but couldn't because of the straps on her arms. I just leaned down close to her and held her hand and stroked the bridge of her nose and told her it was ok...

Every cell in my body was screaming at me to just take her out of that hospital right then and there... I should've done it when they were first hooking her up and realized there would be no PH probe or EEG, and no one would even talk to me about it... I don't think anyone was even "in charge" there! If I learned anything from this experience, it is to trust my instincts. Also, to be more assertive, and to not be so nice while being assertive.

I must have stood there by her bed for an hour or so.. there was no clock in the room... but she finally fell asleep while I stroked her nose bridge. She slept off/on, waking every 20-30 minutes to cry for a few minutes until I calmed her again, reassuring her I was right there. In my estimation, she probably slept 90 minutes to 2 hours during the whole study, and not continuously.. as she would wake every so often as I described above.

At some point I fell asleep (and actually had a nightmare while sleeping...and that rarely happens to me!)

"TIME TO WAKE UP! YOU'RE ALL DONE!!!" is what I heard at 5:30am while bright lights from above blinded me. I lurched up out of the chair bed clutching my heart... Taegan started crying and was trying to cover her eyes but couldn't. I replied "Well that's a nice way to be woken up..." and was ignored.

Then the lady (technician? who knows!) started unwrapping Taegan's head and started yanking off the electrodes... I say yanking because that is what she was doing! I couldn't believe how rough she was being. I even told her I would take them off and put my hand on hers as a hint to make her STOP!!!!!!!! She didn't stop, but allowed me to assist.

Then she says, "You're going to take her home and put her in the shower, right?" I knew what she was implying... she didn't want to have to wash all the goopy gel/glue out of Taegan's hair and off her face.

I said, 'I cannot take her outside with this in her hair, it is too cold, and it will get all over her coat and her hat and the car seat. Just give me the shampoo and a towel and I will do it." and she gave me a look like I was being a pain in the ass, and said, "No, I can get her washed up, it's not a problem." Really...

So then she starts scrubbing Taegan's head with a wash rag and soap, and Taegan's whole head is bouncing all around because she's scrubbing so hard. Taegan, who as many of you know, is very even tempered and good natured, grabbed this lady's hand and pinched it real hard. I didn't have the heart to tell her NO, because I didn't blame her one bit! That is the first and only time I've ever seen Taegan react that way to anyone, even play mates! Other kids have taken toys away from Taegan etc. and it doesn't phase her... she's an easy going kid. I didn't know my child had it in her... so in a weird way, that was good to see.

After the pinching incident, I took the wash rag and soap and told the lady I'd finish the other side of Taegan's head. And I did. And we left... not even a goodbye.

I was so exhausted and emotionally drained... Taegan cried all the way out to the car, and looked worse than I felt(red face and eyes all puffy). We cried together on the ride back home at 6:30am. and I worried that I might have scarred my daughter for life with that experience. I pray she doesn't remember it... My earliest memory is around the age of 3, so I can only hope she wont remember this terrible experience.

She's been more clingy to me since then, and also gets upset when I leave her at Grandma & Grandpa's (if she realizes I'm leaving or I've left). Could just be her age... I hope anyway!

I called her pediatrician for the test results this week and it turns out she does have sleep apnea. So, the next step is to get her into an ENT (ear, nose, throat) doctor. The pediatrician scheduled us for an appt. at the same hospital as the sleep study was done in, and I am going to cancel that appt. on Monday and find another ENT. Nothing against the Dr. they have chosen, it's the hospital.. and just yesterday I heard that several people have had terrible experiences at the ENT clinic in this hospital. I'm not even going to waste my time...

I'll be sure to update this site once she's been seen by the ENT. Hopefully we can get this apnea under control/fixed before too long, as it can be dangerous.

Thanks for everyone's thoughts and prayers.