My Story (by Michelle/Mommy)

I’ve wanted to take the time to write “my story” for a while. I just never seem to find the time. Imagine that. I feel as if there is so much to be thankful for in my life…my awesome kids, committed husband, helpful friends and family, etc. So, why would I want to say anything to make me appear to be unappreciative? Or sad…

I’m not sad. I’m proud, I’m humbled, I’m amazed, I’m gracious. On the outside.

It’s what happens on the inside that doesn’t get the attention it probably should. I’m angry, frustrated, confused, lonely, lost… and I’m scared.

Why? Like I said, I wouldn’t want to ruin my image or be perceived as an ingrate. I just want to say what’s on my mind for once. To come clean with my real feelings as they’ve changed in recent years. You see, it’s not what I want people to think about me, but it’s the truth. And I’m slowly learning that it’s okay to have these feelings. That it’s okay to want more out of life than to just “get by.” I want more for myself, and I want more for my children. More, you say? Like, more money, more “things”? NO. I want more time, more love, more help, more enjoyment, satisfaction, fulfillment, contentment.

I’ll be honest. I feel cheated. I feel like my life was going just fine…I had three healthy boys, a nice house, a reliable vehicle, a career, and a hard-working husband. I still do (minus the reliable car). The difference is that now I have a new set of circumstances that make it impossible to survive. These things are slowly being plucked away one at a time. Yes, we have help from family. I’m truly grateful for that, but even that is coming to an end. I feel cheated because I wanted a girl so badly. I wanted a precious little pink bundle that I could go shopping with, get pedicures with, plan a wedding for and be in the delivery room when her baby was born. I feel guilty. Guilty that I asked for more. That I wasn’t happy enough with what I had. And, now, as I sit seemingly complaining about it, I feel even more guilt. I got everything I asked for and more. I got a beautiful, happy, pink, precious little bundle. She just came with some bonuses! It’s like the pack of crayons that comes with “24 free/extra.” I got a lot more than I asked for. I also learned some lessons. I learned how hard my heart can hurt. I learned how long I can cry before there are no more tears. I learned how to look in the mirror and see a shell of who I was. I learned what giving your life to save someone else’s could mean. I learned about God and what Garth Brooks was really saying in his song, “Unanswered Prayers.” I learned to swallow my pride and bite my tongue. And I learned how to just “get by.” But I don’t want that anymore. I want to live. I don’t want to wake up every morning with a lump in my throat. And I don’t want my kids to see me this way.

You see…I’m a complete mess. I don’t know which way is up anymore. I’m a contradicting, emotional, unpredictable wreck. I love something one minute and hate it the next. I don’t want to hear about your normal kids’ accomplishments, but I want to be reminded of what normal is. I want to call you and chat, but I can’t call you and chat. I want to hug all the doctors, then slap them across the face. I want to throw a party when Whitney eats a cracker, but run to the bathroom and cry because she still can’t chew. I want to listen to your advice and try to make sense of it, but cuss at you under my breath because you have NO idea. I will tell you everything’s fine because it takes too long to tell you what’s really going on. I want to be happy that you ask about my daughter, but be pissed that you don’t ask more often. I want to listen to your problems, but laugh inside thinking you have no idea what real problems are. I will smile and wave even when it takes every ounce of energy I have. And I know you don’t get it. I don’t expect you to. These aren’t your problems. I didn’t ask for them either, or did I?

I knew I would have a disabled child. How? If I tried to explain it to you, you’d think I was nuts. It started back in high school. There was a boy named Dax. You may remember him. “Come to Daddy!” he would say to the girls in the hallway. He knew my first and last name, he knew what kind of car I drove, and all I knew was his first name. I had visions. Yes, visions. I saw myself caring for a handicapped child like Dax. After having my third healthy child, I finally decided I had lucked out. But I didn’t. I want to go back to PSHS and give Dax a hug. I want to thank him for the lesson he taught me. I want to thank him for taking the time to learn about me even when I didn’t ask him to. I want to go back and learn about him. To give him the time he gave me.

I also knew because Jason and I, together, have the worst luck of anyone out there. I’m not lying. If there’s something that can go wrong it will happen to us. Have you seen our yard? It’s all because it rained on our wedding day. A freak monsoon came through Abilene on June 12, 1999. I ended up with three boys because boys are challenging. I had four kids because, as my mom says, “Nobody in their right mind would have more than two kids.” I became a teacher even though my mom always told me not to teach school. Jason got a speeding ticket the other day when we have absolutely NO way of paying for it. I could go on all day about random, bad luck that we’ve encountered. Bad stuff just happens to us. Am I saying that Whitney is a “bad thing?” If you honestly have to ask that question, then you clearly haven’t been listening to what I’m saying.

There are so many challenges that go along with being a parent. Staying at home with my kids is a challenge in itself. I have two that are in school now. This is a blessing, but it’s not. They require the usual morning duties of being awoken several times before they finally rise, helping them to get dressed, brushing their teeth, feeding them breakfast, stocking their backpacks with school work, snacks, water bottle, jacket. Then, getting the other two little ones out of bed, dressed and everybody in the car to drop off at two different campuses. We come home to make the morning rounds. You know, give Whit her first round of meds that must be given one hour before she eats (thyroid), a half tablet dissolved in water Monday through Thursday and a whole tablet Friday through Sunday. While we are allowing her meds to do their thing, it’s making chocolate milk for Ryder who must have Miralax mixed in his morning drink every morning or we end up doing an enema once a week. Then, we drag out every toy known to man-kind while mommy tries to make the beds, fold a few items of laundry, and brush her teeth, if she’s lucky. There’s the constant crying, complaining and grunts that come from the little ones. Since Whit can’t speak she brings everything to you and grunts as if to ask, “What’s this?” She wants you to name every item in the room and you don’t ignore her. In the midst of all the excitement, there will be dog poop to clean up, phones begging to be answered, and a cry for help with wiping from the restroom down the hall. Now it’s time for breakfast. Whit can’t feed herself, so it’s baby cereal and pureed fruit mixed with milk and warmed to just the right temperature. Has it been an hour already since her first round of meds? The next set of meds has to be given with food, but not after 9am. This is her blood pressure medication. It also has to be given at 12-hour intervals every day. As she’s being fed, the doorbell rings for one of her many therapies. Five therapies a week. Thankfully they come to the house. I used to worry that there were toys all over the place and try to tidy up, but I stopped caring. While the therapist works with Whit, it’s always amusing to keep Ryder from interrupting and try to spend some QT with him. Therapy is over and now it’s time for diaper changes, picking up toys, and lunch. Wait, did I ever brush my teeth today? While Ryder brings a new DVD to me begging to watch another one every 10 minutes, I’m trying to unload the dishwasher, take out the trash, keep Whitney from arching on the floor, and remembering to breathe. Two o’clock comes around and it’s time to get everybody in the car to go pick up kids from school. Of course, someone will need to poop before we make it to the car….even though they just pooped 4 times this morning. We have to bring a sippy cup of milk for Whit in the car in hopes that she might catch a short cat nap since picking up kids from school comes at the same time as she needs to be napping. So, on the road to pick up Chase. He gets out at 2:55. Hunter doesn’t get out until 3:25, so we get to drive to another campus and sit in the car waiting. Waiting while listening to Ryder tell the story of Godzilla and ask me 500 times who’s more scarier…Hulk or King Guiddora? I don’t even know if that’s how you spell that. All I know is that if I say Hulk, then I get asked why not King Gui-whatever, and vice-versa. Now the fun begins…because once I have all four kids in the car the fighting begins. We can never make it all the way back home without someone crying and another hitting. Or biting. Or blurting out random curse words to see if mom is paying attention. I’m not.

I could give you a minute-by-minute rundown of what the rest of my day/evening is like, but I’m sure you get the idea. This is all the “normal” stuff that happens each day. Add in the doctor visits, paperwork for every program under the sun created for special needs kids only to be denied, and the occasional illness….who am I kidding? Somebody is always sick. It’s tiring just reading about, huh? How dare you wonder why I don’t call you back, or return your texts as quickly as I should. Because, you see, my day doesn’t ever slow down, it just gets worse. And it wears me out. I don’t even take the time to eat a meal much anymore. My hair is gray (under the hair color that I buy in a box because I can’t afford to go to the salon). I honestly can’t tell you if I’ve shaved, brushed my teeth, put on deodorant, or showered in the last few days if I don’t write it down. Yes, I know.

I LOVE my kids. I LOVE being a mom. But, I keep questioning God. Yes, I said it. I feel awful for writing it, but I do. I’ve read the bible verses, I’ve listened in church, but WHY? He doesn’t give us more than we can manage? Really. I feel like I won the lottery and the prize is using my life as an example of all the s*!t that can happen to someone.

And the next avenue to address is me going back to work. The original plan was that I’d go back after Whitney was a few months old. That’s before we knew she came with all those extras. I’ve shared the story about what I felt finding out that she was disabled, handicapped, special needs, whatever you want to call it. How on Earth could a mother go back to work with all that on her plate? Not to mention, if I did go back to work I would be taking off every-other day to take her to a new specialist or drive to Ft. Worth at the drop of a hat. But things have changed. I HAVE to go back to work now. Why? I told you, we can’t afford our house, our car, our medical bills, or anything else. I have filled out applications, begged for interviews, but I don’t want to do it. I’ll be honest….the very last thing on Earth that I want to do is leave my special baby with anyone all day long. She deserves the best. She needs her mommy. The truth is, there is no substitute. Did you read all the medication and feeding/therapy junk she requires every day? Not to mention her blood pressure has to be monitored now because we can’t seem to get it regulated. I have an interview tomorrow. I’ve made myself sick worrying about it. Not about the interview, but about the fact that they might offer me a job. Yes, I NEED a paying job and we NEED the money, but what about what Whitney needs? Is it worth it?

There have been way more tears in the last few days than should ever be cried by a human. I’m angry again. Angry that I’m being put in this situation. I’m questioning the man upstairs even more. If He gave me this gift, then why in the world would he want to make it so damn hard for me to take care of it? Can I go back to work and function? I honestly can’t say that I could. I know with every ounce of my being that I would do nothing but worry and cry all day thinking about what I’ve done. You know why? Because in the back of my mind I file away the dark thoughts. The what-ifs. I try not to think about them often. What if Whitney doesn’t make it to her 3^rd birthday? What if there are other conditions that haven’t surfaced? What if she takes her first step? Yes, her first step. I’ve waited patiently for two and a half years now and we’re still not there. I don’t know that I can deal with that. I understand…every mother wants to be there for their firsts, but what if you couldn’t be sure that their first wasn’t also their last? Is a really small paycheck worth it?

I feel lots and lots of guilt all the time. I feel guilty for comparing my child to others with disabilities. I feel guilty that I look at kids with Down Syndrome and wish that was all that Whitney had. I feel guilty for all the attention that Whitney gets and how little my boys get these days. There’s guilt with wishing that I could be the one with some horrible disease….cancer, whatever, just to take away Whit’s problems. I feel guilty for rolling my eyes when someone says their child has to have blood drawn or tubes put in their ears. All of these things happen and then they’re over with. What my daughter has will never go away. It will never get better. You can’t fix chromosomes. There’s no chemo treatment for genetics. And what I worry about the very most in this life is that we don’t know what the future holds. There are no studies on kids with “Whitney’s Syndrome.” That has a nice ring to it,huh?

I’ve heard that there are no perfect people in this world, so I’m okay with letting you inside my thoughts. But, to be honest, I think they were wrong. Because there is a perfect person in my world. It’s Whitney. And, there’s nowhere else I’d rather be than holding her hand as she makes her way through this life. I don’t want her to just “get by.” I want her to succeed and I want to be the one to help her do it. I pray every night that Whitney will make it. Make it in life, make it in the world, and most importantly…make it when I’m gone. While most of the world is dreaming about vacations and being on Jersey Shore, I’m dreaming of a world where my daughter is just normal. A world where she can walk, talk, feed herself, dress herself, and make friends. Where she doesn’t require medications to survive or therapy to function. A world where she can just live.

Thyroid and Hypertension

Whitney's blood pressure has been high for several months, maybe longer, so her Pediatrician decided to send her to a Nephrologist and Endocrinologist to try and find the cause.

After seeing the Nephrologist Whitney was sent for a nuclear screen of her kidneys and sonogram under sedation. The results of those tests were normal. However, the doctor said he noticed that her urethra was abnormally long. That will be an issue to bring to the Urologist in August. Whit was started on a blood pressure medication and will be seen again in a few weeks.

The Endocrinologist sent Whitney for a LOT of bloodwork. We are still waiting on the full report, but the initial tests showed that her thyroid producing hormone was off, so she will begin taking a medication for her thyroid today.

I know I shouldn't complain because things could be much worse, but her medication list is growing and I'm having a hard time with all the rules. She can only have the thyroid med early in the morning an hour before breakfast...and her vitamin which she normally takes with breakfast has to be moved to lunch. The blood pressure med has to be given with food twice a day EXACTLY 12 hours apart. ...and both meds have to be refrigerated. It's just annoying more than anything else. I was so scared to start the blood pressure meds so I waited until Sunday when my mom and Jason were both home just in case she had a weird reaction to it. So far she seems to be doing fine. I wish that I had a pediatric monitor to check it though.

On another note, our house in Abilene is still for sale and we'd love for someone to buy it soon! We are enjoying living with Gigi, but 7 kids and 3 dogs in a three bedroom house is not as fun as it may sound. The boys have yet to make any friends here in Dallas, but I'm hoping that will change when school starts. They are anxious to meet kids their age. Apparently I'm boring and spending the whole summer at home with me is lame. We have been going to the pool some, but it's hard to take Whit because it's so dang hot outside and she has some big-time sensory issues with water and hot/cold. I've just recently been able to splash water on her feet.

I try not to complain a lot, but I'm realizing this summer that having four kids all to yourself for 8-12 hours a day is tiring. Why do I not complain? Because I decided to have four kids...I asked for it. I've tried to go to the mall a few times, but it's so much work to get 2 strollers out, fight with the kids about who will push one stroller, listen to complaining and arguments, buy $25 worth of ice cream to try and appease them, etc that I've decided it's not worth it. I would love to take my kids to the zoo or aquarium or six flags or anywhere....but I feel like I've been physically and mentally abused everytime I leave the house with them :)

Whitney will see a new eye doctor today to check her vision and recheck her strabismus repair. I'm still hoping that she won't need glasses...just something else to keep up with!

Whitney Turns 2 !

Whitney had her second birthday on May 29th. She got lots of new toys and spent the day with our family at Aunt Debi's and Uncle Don-Don's house. She got three cakes this year! Her favorite was a zebra striped cake with hot pink decorations. Her favorite toy was a new 3-D food puzzle.

Whitney has done well with the move from Abilene to Dallas. She is enjoying being with Gigi, her favorite person. She has a new Pediatrician that we love and is seeing new specialists that have privileges at Children's Medical Center. It is much closer than Cook Children's was.

Whit's blood pressure has still been high, so she was referred to a Cardiologist and a Nephrologist. She will also see a Endocrinologist on July 9. These doctors are working together to try and determine the cause of her hypertension. The cardiology appointment went well. No problems or defects were seen with the structure of her heart and there is no damage to her heart caused by the hypertension as of now. The Nephrologist thinks that her problem might be related to her kidneys. She has a history of Grade IV Bilateral Kidney Reflux. We were told that it had resolved on its own about a year ago, but the Nephrologist said that it's highly unlikely that she went from Grade IV to absolutely no reflux. He suggests that she probably still has some kidney issues. So, we are scheduled to have a nuclear medicine procedure (DMSA) along with a renal sonogram to check for scarring and defects of the kidneys. These procedures will be done under anesthesia at Medical City Dallas. She also had some blood work done yesterday that will check her kidney functions and look for problems in her blood. We were also told that the Endocrinologist might want to do an MRI under sedation, so we are trying to get that done the same day so that she doesn't have to receive anesthesia twice so close together. The Endocrinoligist will be looking at her pituitary gland to check for issues related to her T4 (Thyroid-related) levels being high. Hopefully we will get some sort of answer and be able to correct the problem so that her blood pressure can be regulated. We were warned about the effects of hypertension over long periods of time including heart attack, stroke, kidney injury, and changes to the heart muscle. We will be so glad when we have some answers so that we can prevent anything more serious from happening.

Besides this setback, Whit is doing great. She has started seeing her new therapists here in Dallas. She will be receiving Physical Therapy, Speech Therapy, and Occupational Therapy at home. We are also going to be evaluated at Baylor Medical Center for a program they have which might help her even more with her eating aversions.

Lastly, Whitney completed her overnight stay in the nursing home on Monday night, so she is now in the MDCP program (Medically Dependent Children Program). This means that she will receive Medicaid (although I still haven't received a letter from them yet) and she can receive respite care through the program. We have chosen Gigi to provide the respite care, so she will be in good hands!

We are still waiting for Medicaid to come through with a spenddown program that was supposed to help us pay about $8,000 in medical bills from February and March of 2010. This is when she had the 24-hour EEG at Cook's, a swallow study, and was hospitalized in Florida with Pneumonia. The bills added up and we applied for assistance for those bills. We were told that the bills would be paid, but now they're saying that she might not be covered during that time. I have had a TIME dealing with all of this. I can't even begin to explain how many times I've copied and faxed invoices, requested itemized statements, written letters, etc. I was told once that they lost my paperwork, so I had to do it all again (and, yes, I saved copies the second time!). Now they're telling me they have no record of Whitney in their system. I'm just about fed up with the system. I've lost it a few times lately, but I'll keep fighting as long as it takes. One thing I've learned through this journey so far is that you can NEVER give up. EVER.

On a lighter note, Jason's new job is going great. He is working crazy hours (7am to around 9:30pm) most nights, but he's doing so well! He's a sales representative for a company that sells air conditioning units and other services. He is an awesome salesman! We are so proud of him.

An Answered Prayer

We got some really good news a few days ago that took a huge weight off of my shoulders. Whitney was approved for a waiver that will allow her to bypass an 8-year-long waiting list for the MDCP (Medically Dependent Children) program offered by the state of Texas. Whitney has been on the list since she was about 2 months old, but until recently we had no idea about a waiver that is offered to qualified kids. I contacted a case worker and she came out with a nurse to evaluate Whitney about a month ago. They asked a lot of questions and reviewed her health history and developmental issues. I was afraid Whit wouldn't be approved because they sounded like if she didn't have a trach or feeding tube, then she might not be medically fragile enough to qualify, but she did qualify! The state reviewed her case and decided she was medically dependent enough to need help immediately. This means she will have to stay 24 hours in a nursing home (with me) in order to technically say that she is unable to function without constant medical supervision. After that we will be set up with 13 hours per week of either a nurse at our home or we can delegate someone, in this case my mom, to be her attendant for 13 hours per week. This will allow me (mommy) to take a break once in a while! She will also receive Medicaid secondary to our primary health insurance which means that Medicaid will pick up what her insurance doesn't cover! What a blessing. It has been so expensive with only BCBS because each office visit was $40 and each prescription was at least $25 and then you have lab work, x-rays, MRIs, CT scans, VCUGs, ECGs, surgeries, hospital stays, etc.....the list goes on. As you can imagine, we owed a lot of money to a lot of people! For example, Whit's hospital stay with Pneumonia in Florida over Spring Break amounted to more than $10,000! Her 24-hour ECG evaluation for seizures was the same amount. Things were getting really difficult around here until this news came. I'll share more about the program when I have more answers. We are just thrilled that Whitney was approved. This came not a moment too soon for our family.

As far as Whit's health, she's been well lately. She has been having some sensory issues that have exaggerated themselves in the past few weeks. She is having an aversion to certain foods, textures, sounds, sights, and has been crawling with her fingers lifted and putting her weight on her wrists. So, an occupational therapist came to the house and determined that she needs their services as well. We now have Physical Therapy twice weekly, Speech Therapy once weekly, and we will begin Occupational Therapy once per week soon. We have been thrilled with all of Whit's therapists in Abilene, so I'm crossing my fingers that when we move to Dallas we will be paired up with therapists we love just as much.

In other news, we are still planning to move to Dallas at the beginning of June. Our house is on the market and the kids have planned a "goodbye party" for all their friends in a couple of weeks. They are happy about moving, but I think we will all miss our friends in Abilene. It will be so nice to be near my mom and my sister and her family as well as all of Whit's specialty docs. There are also a lot of my friends from childhood and high school that I'm anxious to reconnect with. Some that I've kept up with all along and others that I haven't seen in ages.

Along the same lines, it seems like there are so many great ways to keep in touch with people these days, like Facebook for example. I've learned so much about people just from reading about and seeing pics of them. Some people who were mere acquaintances in the past now seem like old friends just from fb! I know that sounds silly, but I'm really excited to get to know some of these people better once we're in the metroplex and able to hang out more. However, fb can be bad too. I get irritated reading about people going places with mutual friends or taking trips, etc and I feel left out and wonder why they didn't invite me. lol I think I've allowed myself to become a hermit lately since we've been preparing for the move and then there's that crazy idea of having four kids always around! haha I would just like to make it known that just because we have 4 kids and seem old and lame doesn't mean we can't still have fun! I NEED to have fun! I love being with my kiddos, but once in a while I would love to be around other adults (or those who claim to be). So, if any of you are planning fun trips to Cabo or Vegas and you're thinking we wouldn't go because we are busy, YOU ARE WRONG!!! :-) Ok, off my soapbox now. I don't often take the opportunity to vent, but maybe this summer air is making me loony. Whatever the case, I feel better now.

Now, to find a great Pediatrician for Whitney in Dallas/Plano that also accepts Medicaid! I've had many recommendations of fantastic docs, but the problem is that most of them don't accept Medicaid. BUT, only one of my kids has Medicaid and it's secondary to their regular insurance! They don't care, trust me I've already made the calls!

Easter in Flower Mound

Whitney had a great Easter! We spent the weekend at my sister's house in Flower Mound. Taylor, my niece, was in town from college and we were able to spend some time with her. The boys had fun hunting Easter eggs in the backyard and daring each other to jump into the cold pool after being in the hot tub! Even Daddy got in on the dares. Whitney wore her Easter dress that Gigi picked out and looked like a little princess. Her shoes even had stone-embellished crowns on them :)

Things have been going well for Whitney. All of her blood work and kidney ultrasound came back fine except for showing an elevated thyroid which will be rechecked in a few months. She had a high thyroid at birth, so that's not really a surprise, but we haven't had it checked since then. Jason also has a thyroid problem, so I guess it's his fault! haha She has fully recovered from Pneumonia and is healthy for now. (knock on wood). Her blood pressure continues to be high, but sometimes only in one arm. They still haven't figured that out. I'm thinking a visit to her Cardiologist, whom she hasn't seen since 2 months of age, is in the forecast.

We met with a case manager from the MDCP program (Medically Dependent Children) yesterday along with a nurse who evaluated Whitney. They will determine if she qualifies for a state waiver to bypass the waiting list she has been on since about 2 months of age. If she qualifies, she will receive Medicaid secondary to our private insurance as well as respite care and a nurse who will visit weekly. They also help with other costs associated with equipment, etc. This would be a LIFESAVER!!!! We are really praying that she is accepted. The only thing they require is that she stays one night in a nursing home, but I would be allowed to stay with her. I think I can live with that!

Whitney's new wheelchair is great. We got accustomed to the loaner wheelchair which was really easy to maneuver and more user-friendly. However, the new chair is more plush and smaller. It still weighs a lot! I have a hard time lifting it in and out of the car. I timed myself today, and it took 12 minutes to get all 4 kids along with all their stuff, diaper bag, and the wheelchair in or out of the car. Those of you who know my kids can imagine what this involves as far as fighting siblings and a screaming toddler (and I'm not talking about Whitney)! I dread the days when Jason is at work and I'm left to run errands with the whole crew, but I always seem to get it done. I have a great story about taking all 4 kids and all 3 dogs to the vet a few weeks ago. I almost lost one dog to a busy intersection, but miraculously we all made it home alive.

The boys have about six weeks of school left and are super-excited to be out for the summer. There are lots of activities planned at school for both big boys and we will be busy with those as well as soccer and baseball. Whitney has been a real trooper braving the high winds out at the ballpark. She loves watching her brothers play ball :)

Disneyworld and Pneumonia

What started out to be a fun-filled week in Florida ended with a 3-day stay in the hospital for Miss Whit.

Originally, we had planned to go to Utah to see Jason's aunt, uncle, and brother for Spring Break. However, after lots of thought we decided that we would just go to Dallas for the week and hang out with Gigi. When Gigi found out we were going to spend Spring Break with her, she decided to take us all to Orlando! Clearly we had to drive since airfare for our family would be outrageous. So, we began our trip on Sunday morning and drove from Dallas to New Orleans. We walked down Bourbon Street (on a side note, I DO NOT recommend taking your kids to Bourbon St!!!!!) and stayed the night, then woke up early Monday and finished the drive to Orlando (Kissimmee). We stayed at a beautiful resort there complete with swan shaped paddle boats, 16 pools and a miniature dinosaur-themed golf course! The boys had a blast. We visited Magic Kingdom at Disneyworld and went to Universal Studios.

While we were at Universal Studios on Thursday, Whitney started running a low-grade fever. By the time we hit Hard Rock Cafe for dinner I could tell that her fever had risen and she was refusing to eat or drink. So, we left the park after dinner and stopped at a Walgreen's to pick up some Tylenol and Motrin before heading back to the condo. Her fever went down a little bit, but she was still really warm. However, she wanted to sleep after such a long day, so we put her to bed. She was up most of the night making little moaning noises, almost like she was struggling to breathe. I put her in our bed so that I could be closer to her and kept watch over her through the night, only dozing off for minutes at a time. By morning her fever was up to 103 degrees and she was coughing and still refusing to eat or drink. We gave her some more Tylenol, but this time her fever was not budging. We waited a few hours and tried Motrin, but still no luck. Gigi stayed in the condo with Whit while Jason and I took the boys to ride the paddle boats, and when we came back to change into swimsuits to head to the pool, Whit was coughing and unable to nap and still running high fever. So, I decided it would be a good idea to have her checked out. We had a LONG drive ahead of us that was supposed to begin Saturday morning and I didn't want to risk her getting sicker on the trip home. Since it was Friday afternoon, there were no doctor offices open. We decided to take her to the Florida Hospital ER, which was in Kissimmee about 4 miles from where we were staying. Gigi stayed behind with the boys so they could swim.

When we arrived at the hospital, they took her vitals and were concerned that her fever was 103 and her oxygen saturation was hovering around 90-92%. They found a bed for her, in the hallway, and we waited for a doctor. The doctor thought she had RSV, so they tested her for RSV and Strep, but both tests came back negative. Still concerned about her oxygen levels, the doc decided to do a chest x-ray just to rule out anything. That's when we learned that she had Pneumonia in her right lung. I was so glad that I decided to take her to the ER. There are so many stories lately of people having complications from pneumonia, so thank God we caught it early. They put her on an iv and administered a strong antibiotic, drew some blood, took a urine sample, and gave her some breathing treatments. Then, we were told that the Kissimmee hospital did not have a pediatric unit, so we would have to be transferred to the downtown Orlando location which was 30 miles away. So, we were stuck in an ambulance and taken to Disney Children's Hospital (Florida Hospital's pediatric hospital). That place was amazing! It was soooooo nice. Her room was on the 14th floor and had huge windows that overlooked downtown Orlando. We had a huge flat screen tv mounted on the wall with free access to the top Disney movies out as well as a list of other movies including The Proposal. The room was all new and even the bed was fancier than most other baby crib hospital beds we've seen! It was swanky :)

After staying the night we saw a doctor the next afternoon who explained that he didn't typically like to send pneumonia patients home until they were fever free for 24 hours. He said that he could discharge Whitney if we really wanted to leave, but he recommended that she stay another night to give her a chance to do well on the long road trip and prevent anymore hospital stops along the way. We agreed to stay and I'm so glad we did. Her fever continued to rise again and she was having high blood pressures. She also pulled her iv out, so they had to administer her antibiotics by injection. Poor little Whit had lots of needles poked in her little legs during the 2 1/2 days we were there. Her lungs were sounding better and her oxygen levels were up some. The next day she was able to hold her fever down to 100 degrees or less, so we decided to go ahead and check out and were sent away with an oral antibiotic. She did well on the drive back to Texas. We stopped in Pensacola to stay the first night and then drove to Dallas where we dropped off Gigi and picked up our dogs who had been staying with my sister. We finally made it back to Abilene Tuesday night. The boys missed two days of school and then I forgot to reset the clocks at home, so they were late to school on Wednesday! ugh.

On Wednesday we took Whit to see the Pediatrician in Abilene to check her lungs and also ask about the high blood pressure, which she was still having. He said her lungs sounded good and sent us to Hendrick Children's across the street for LOTS of blood work. My little angel just doesn't catch a break lately :( After 2 sticks, one in each arm, they finally got enough blood for all the tests. We are also scheduled for a sonogram of her kidneys next Monday morning. We are waiting to hear what the blood tests showed, if anything, to get some answers about her high bp. They are checking her kidneys to make sure there's no problem there. Sometimes kidney problems can cause blood pressure to rise.

In the meantime, we got Whit's new wheelchair! I'll post a pic and tell more about it and her test results when I know more. It's late and I need sleep!!! :)

Opisthotonic Sterotypies with Cognitive Dissociation

Don't worry, we couldn't pronounce it either. Whit was monitored for 24 hours and it was determined that she is not having seizures. The event that happened last Monday night where she seemed out of it and tired afterward was a perfect example of her new diagnosis. We've known that she has these episodes of opisthotonic posturing, but never could seem to get anyone to explain what it meant and why she was doing it. ...until we met the doctor that visited us while in the Epilepsy Unit this week. He happens to be a Movement Specialist and Neurologist who works in the same office as her current Neurologist and Neurosurgeon. He explained that there are many kids that have stereotypies. They are similar to tics. The difference is that tics tend to start later in childhood and are typically unilateral, meaning happening on one side of the body. Sterotypies are typically bilateral and start at an early age and tend to be more involved than tics. Whit uses her whole body to arch her back leaving only her heels and the top of her head touching the floor. She then flails her arms wildly and pants. Sometimes she holds her breath, but doesn't pass out. The doctor explained that when she holds her breath, she is experiencing "cognitive dissociation." Kind of like being in a zone, but not completely absent-minded.

As much as we are relieved that she is not having seizures, we are now concerned about the extent to which she carries out these episodes. She seems not to have control over when and where they happen, hence the reason that she cannot sit in a highchair or other seating that does not have a back on it, not even a shopping cart. She often throws herself backward and with her high pain tolerance, she is certain to hurt herself if we don't keep tabs on it. The doctor explained that sometimes when kids get older and realize what they're doing they may be able to exchange the action for something less "obnoxious." (that is my word, not the doctor's!) We are hoping that is the case. I would hate for her to be walking someday (assuming she will walk one day) and fall backward to put herself into this posture. It kind of looks like she's a member of the Cirque du Soleil! She's very flexible :) I have started joking to the boys that Whit is playing Twister when she does it! You have to learn to make light of situations to keep the sadness away sometimes!

We are happy to be back home to our boys and get things back to normal. They were all very worried about their baby sister and were so relieved when they heard that she was just fine.

It's funny how things work. Just when I think to myself that it's been a while since we made a trip to Cook Children's we seem to be back on the road for something new. I'm hoping things are going to calm down for a while. Hunter and Chase are both playing soccer and baseball. Hunter's baseball team is practicing 3 times per week and he has soccer twice per week. Chase's teams each practice once per week. Things are already crazy enough around here with that kind of schedule!

CT Scan and Another Trip to Cook Children's

Whitney has been "arching" a lot more lately and her speech therapist even mentioned last week that Whit's forehead seemed to be bulging more than usual. Whitney was running a low grade fever on Wednesday of last week, so I took her in to see her Pediatrician on Thursday. Both of her ears were infected which makes the second ear infection in 40 days :( Her ears have stayed infected ever since she was taken off her preventative antibiotic for the kidney reflux. Her tubes fell out earlier in the year. Anyway, we discussed putting her back on a preventative antibiotic to try and keep the ears healthy and avoid another procedure (ear tubes) since she's had so much done lately.

While we were at the doctor's office, I mentioned that her speech therapist commented about her head seeming bigger. He asked his nurse to measure her head, and sure enough, he agreed that it had grown a bit too much for his liking in the past 2 months. So, he made a call to her Neurosurgeon to see what the plan would be.

In the meantime, Whitney was feeling better, but still arching (opisthotonus) like crazy over the weekend. Well, last night (Monday) Whitney was playing on the living room floor and we noticed she suddenly got quiet and turned onto her side, but still arching. Jason went over to pick her up and he said that she was "out of it." She just stared at him and seemed like she was dazed. He also said that her pupils were two different sizes. He talked to her and tried to get her to respond, and finally after a few minutes she became alert. However, she was really groggy and tired right afterward for several minutes. Then, I went back into the living room where she had been playing and found a huge chunk of her hair on the floor. I guess she'd pulled out her hair during this "episode" and never uttered a peep about it. We were concerned, so I called the doctor on call. He recommended that we watch her overnight and if she didn't have another episode to bring her in to the office this morning (Tuesday). So, we took her in this morning.

The Pediatrician evaluated her and listened to our story and decided he thought she'd had a seizure. So, he called the Neurosurgeon and Neurologist again and we have an appointment set up for Thursday morning at Cook Children's with the Neurosurgeon. The nurse from that office called today and recommended that we bring a CT scan, so we had to run over to Hendrick and get a STAT CT scan today. The nurse at Cook also told us that from now on we should skip the calling the doctor bit and bring her directly to the Cook ER if we suspect seizure activity given her history. We were told to expect to stay overnight on Thursday if the doctor feels that she needs to be admitted for evaluation. So, we are headed to Fort Worth on Thursday morning bright and early praying that everything is fine. I'll update when we know more.

Swallow Study Complete and Issues with Wheelchair

Whitney had her swallow study done and the good news is that she does not have a problem with her anatomy! The x-rays showed that she's holding the food in the back of her throat and not swallowing until something pureed or liquid comes along. So, she thinks she's choking, but she actually just isn't chewing and therefore isn't able to get the food down without help. So, for now we will just continue to try to help her work on chewing. We were told to ask our Speech Therapist about excercises we could do to help her learn to chew, but so far the ST hasn't had many ideas to help Whitney since Whit can't comprehend what she's trying to tell her. We are working on immitation and exaggerated chewing motions to try to get her jaw and tongue moving. She is still only accepting pureed stage 2 baby foods without complaining. We have been adding some texture to these foods by crumbling finely crushed graham crackers and Gerber puffs into every-other bite of food. Sometimes she does okay with that, but other times she gags.

As for Whit's wheelchair, we are still waiting to find a way to buy her new chair. We still have the chair that the medical supply store loaned us, but it's a really old chair and I don't know how long they'll let us keep it. It's been really nice because she likes to ride in it and we are able to take it into restaurants and use it as a highchair without having to worry about her throwing her head back and hurting herself. It's just really big, so I'm anxious to get the new chair because it's supposed to be much more compact. The problem is that we have not met our deductible this year (which is a large chunk of change). So, our insurance is wanting us to pay a LARGE amount up front before they will even order the new wheelchair. Yikes! We are waiting to see if we can figure out a way to get some help from a local foundation who offers assistance to families of disabled kids who need equipment. Otherwise, we may have to give back the borrowed chair and forget about it altogether. I could write an entire book about the shortfalls of our U.S. system, but I won't. I want to keep this whole experience with Whit as uplifting as possible. I'll keep my personal issues to myself.....for now :)

I've included a few photos of Whit. The first is how I often find her in her crib lately! Yes...she is finally pulling to stand!!!!!! This is HUGE for Whitney. I couldn't believe it the first time I saw it. Time to lower the crib mattress!!!! The second photo was taken right before the began her swallow study. She's sitting in a feeding chair with the x-ray machine in the background. Jason and I had to wear vests during the x-rays, but we were able to stay with her and watch the food as it went down her throat.

Loaner Wheels

The order has been put in for Whitney's wheelchair. We decided on the Convaid Cuddlebug. However, it will still be a while before we get it, so in the meantime we are borrowing an older Kid Kart wheelchair from the store that ordered her wheelchair. They had a family donate this one when their child outgrew it, so we were able to use it for a while! Whitney loves it so far. As you can see from the photo, the boys like it too! They think it's cool and are fighting over who gets to push Whit around in it! It makes me feel good that they are so proud of their sister. I thnk it is beneficial for Whit to have THREE big brothers! I dare anybody to ever pick on her :)

Here's a video of Daddy playing with Whit a couple of nights ago. I thought it was so cute.

Whitney's New Gait Trainer

I am so excited because Whitney's Physical Therapist brought a Rifton Pacer Gait Trainer to our house today for Whitney to borrow and she LOVES it! She is doing so well cruising around in it. It has straps and supports that hold her torso in place while she uses her feet to move along. This is exactly what she's been needing. Here's a video of Whit showing off:

Watch Out....She's on the Move!

Whitney has become much more mobile lately. She has got the army crawl down and will not stay in one place. She is all over the house. As much as I'd like to keep her off the cold tile, she insists on scooting around on it. She literally cannot be left alone for more than a few minutes because she will get into something! You have no idea how happy that makes me :) Her favorite places to go are the laundry room and the pantry. She always finds something fun to play with on the floor in these rooms. She has also learned to stay away from Lilly's cage (our new puppy). We keep Lilly in an icrate in the kitchen when it's too cold outside and she is quite the nipper. She has some sharp little puppy teeth. Whitney has learned not to stick her fingers in the cage because we have warned her that "Lilly bites!" She will creep over to Lilly's cage and get really close, but then she looks over at us as if to ask, "Does she still bite today?" We say in a low voice, "Lilly bites." And she backs away and scoots into another room! I took a short video of Whit army crawling in the kitchen...

I have also been working with Whitney on walking with a gait trainer that her PT let us borrow. It is so exciting to see how much she's improved with the gait trainer. She used to cry a lot when we used it, but lately I can't keep her off of it! We keep her equipment in the dining room and she will scoot into the dining room and try to use the gait trainer without us! I have had to watch her more closely because she hasn't gotten the hang of pulling herself up unassisted yet and I'm afraid she's going to hurt herself without our help. She is really acting like she's ready to start learning to walk with the gait trainer, but I really want to get her a gait trainer like this Kid Walk that she can use on her own without us holding her hands in place and keeping her from falling. As you can see in the video below, she is still really unstable in the torso and with the Kid Walk gait trainer, she would have straps around her torso and a piece in the center crotch area that would help stabilize her and give her the feeling of independence that I believe she needs to start moving on her own. I am going to talk to her PT about either borrowing a gait trainer similar to the Kid Walk or finding help to purchase one of our own. I am still fighting hard to find help with the expenses of medical equipment, but am having no luck so far. She is also due for some new orthotic braces and I'm afraid she is going to need the taller version next time. She has begun turning her left knee in when standing with help whereas before it was only her feet rolling in. The equipment is all very expensive, and even with insurance we are still responsible for a large chunk of change.

We are also still working on getting Whitney a stroller that is adaptable to her needs. I was told about a stroller for special needs children that is similar to a real stroller, but with more support. However, I have been researching and have decided that it would be better to get a stroller that is also the right height to push up to a table and be used as a highchair. This way I could use it at restaurants, etc. We are currently carrying around a stroller and a portable high-back high chair in our car for her to use in restaurants. She is unable to use a typical restaurant high chair because they do not have a back on them and she tends to throw her head back randomly. We are using this high chair, which works great for now, but she is very close to outgrowing it. That is why I'd like to purchase a Leckey Squiggles Seat with Safari Tilt base. It offers the support she needs and is at the appropriate height for eating at a table. Whitney will be 2 years old in a few months and I'd like her to start "sitting" at the table with us. I can't believe she's about to be 2 in May!!! That is so crazy. She's still such a baby to us and I'm loving every minute of it!

Cook Children's has also moved her swallow study from February 4th to February 9th. This will work better for us because Jason will be off work that day and won't have to find someone to trade days with him. I also want to speak with their Speech Therapist who will be there for the study and ask what other services are offered for kids that are this far behind with eating. As you can see in pictures, Whitney is not missing any meals, but I firmly believe the earlier we can get her feeding herself and chewing food, the better her chances will be in the future for regular eating habits.

We are still working with her standing frame too. It is also made by Leckey Squiggles. I have loved this standing frame because she can stay in it for up to an hour a day. I try to play her sign language DVDs while she's in the standing frame. She's a captive audience during this time and I'm hoping she's absorbing the info. I've even got the boys watching the DVDs and working on signs with her. They love it!

There are also many other therapeutic treatments I have come across while reading other children's blogs such as Thera Suit Therapy (VERY expensive) and Hyperbaric Oxygen Therapy along with many other programs that seem promising. However, after reading these blogs about other children it is apparent that most of them have help from either government agencies or private donations. As I said before, we have been denied by every program that I have applied for. But, we will keep trying and find a way to help Whitney by offering every piece of equipment and therapy that we can.

Swallow Study Scheduled

We got a call today from Whit's Pediatrician's office. We finally have a swallow study scheduled at Cook Children's Hospital on February 4th. I am very anxious to find out what it shows. Whitney is still unable to eat anything but pureed baby foods. She can't even tolerate regular food that has been mashed in a food processor because it's too clumpy. Some of her baby foods even have to be "watered down" with milk or formula. She gags way too much for a child her age (19 months). It is frustrating not to be able to put food on her highchair tray and allow her to feed herself, but that is but a minor roadblock in the big picture. I just want to be assured that there's nothing anatomically wrong with her, especially since she had a cleft soft palate at birth. I pray that someday Whitney will be able to eat pizza and chicken nuggets with her brothers. Hopefully this test will show either no problem at all or will guide the doctors to fix whatever the problem may be.

On another note, I am frustrated beyond words with the "system." Before having a child with disabilities I had no idea how expensive things were for these families. Therapy, doctor visits, prescriptions, adaptive equipment, surgeries, mobility devices, etc. are so costly. To top it off, our precious U.S. government and state services are impossible to deal with. We do not qualify for many programs due to income levels (though we don't make much for a family of six). We have been put on waiting lists for programs that offer help to children with disabilities. Some of these programs may take years for our name to come up, and others we may never see. Luckily we are able to utilize ECI (Early Childhood Intervention) services for Whit's therapy sessions, but that will end when she is 3 years old as their program only covers children up to that age. I have been around and around with each entity trying to find help with paying for equipment and medical bills only to be turned down (medicaid, social security, children with special health care needs, etc.) If anyone knows any tricks or has any advice, please pass it along! Whitney desperately needs a wheelchair/stroller and it doesn't look like our insurance is going to be very helpful. These devices typcially cost around $3,000-$4,000. I have looked for used chairs and equipment too, but it is difficult to find pediatric equipment that is in good condition or that fits little tiny girls. It saddens me that this is a problem for so many families with handicapped children.

In the meantime, here is a video taken today of Whit and the many new tricks she's learned recently.

Whitney's Christmas

Whitney had a great Christmas. We had Gigi at our house for most of the holiday and spent time with the King side of the family. Whitney enjoyed watching me open her presents on Christmas morning. We tried to get her to do it, but she wasn't so sure. She got some really fun new toys and a dollhouse. Whitney has begun dancing to music. She loves her little piano/keyboard and, as you can see in the videos, she really gets down to the music!

We also traveled to San Antonio with Gigi for a few days just for fun. Whitney enjoyed strolling along the river. We are excited because Whit will be getting her first wheels! She doesn't do well in a regular stroller because her trunk control is not very good. So, in order for us to tote her around in a posture that is both comfortable and good for her we will be ordering a pediatric wheelchair. It is called a wheelchair, but it actually looks very much like a typical stroller frame with a special seat that supports her torso, neck, back and head. I think she will be much better off. I tend to stick her in the stroller quite a bit when I'm running errands or taking the kids to soccer, etc. So, this way I won't feel bad about leaving her in it to watch games or shop. It will probably take a few months to get the new wheels due to insurance and doctor orders, etc. It is very expensive, but so worth it in the long run.

We are still working on crawling. As you can see in one of the videos, she will put herself in the crawling position, but can't figure out how to keep her mid-section stable enough to make a move. She rocks back and forth in the position. She is still not talking, but she is beginning to follow simple commands like "push the button" or "raise your hand." I will try to get a video of that soon. We are so proud of her. She seems to understand a lot more than we give her credit for! I have begun showing her videos of sign language in hopes that she will absorb the signs and use them. She doesn't pay attention to me when I try to teach them (much like her brothers), so maybe this will be more on her level. We'll see.

Something interesting happened to me recently. For the first time I was asked by someone what was wrong with Whitney who had not previously known about her. I asked how they'd heard about her and they replied they hadn't, but that they could tell by looking at her that something was wrong. That was hard. By no means was I angered by the question, but it's just hard to finally realize that others see her differently. I sincerely appreciated his questioning it though because I want people to ask and not be afraid. I want people to understand that she is exactly like every other child in so many ways. I never want anyone to assume that she's untouchable or be afraid to talk to her. She is so "normal" to us that I often forget that she's anything else. It is hard sometimes too to see kids her age acting age-appropriately...running around, talking, sassing their moms! However, I've had that experience THREE times before, so in actuality it's almost a blessing! Whitney acts more like a 6-7 month old baby, and in my heart she will forever be my baby.

Things have changed in my way of thinking since Whitney came along. I used to dream about "one day" when I would be able to leave the house without kids or a stroller, buckling car seats, walking so slowly to hold a hand, etc. I always looked forward to that day when I could go workout or stop at the grocery store whenever I needed to without all the excess baggage. Lately, I've gotten past that. It saddens me to not know whether Whitney will be able to walk on her own without assistance or stay at home alone someday, but I do not feel sorry for myself at all....I feel blessed. As much as I hate all that she has to endure and all that she will have to put up with in her life, I feel so content knowing that she will most likely always live with us at home and that I will have her company every day of my life.

With the new year beginning I think of how grateful I am. Not only for three healthy, precious boys that I love more than life itself, but for this extra-special little angel who smiles at me when I don't deserve it. I am thankful for all that I have.