Surgery Date Set

I apologize for taking so long to update. There hasn't been much to update about until now.

Whitney is set to have surgery to place tubes in her ears and check the rest of her sinus/ear functions. She had tubes placed in her ears at 9 months of age, but they fell out about 10 months later. Since then, she has dealt with many ear infections and upper respiratory problems that always seem to become severe. This season alone she's had 4 ear infections and 3 rounds of upper respiratory gunk. Each comes with high fevers and weeks of antibiotics, sometimes requiring two rounds before we can kick it. We ended up in the ER a couple of weeks ago when we couldn't figure out why she was tremoring. It ended up being her ears and the left one almost burst. Thankfully we were able to treat the pain and infection before that happened. So, for those reasons, we were sent to an ENT in Ft. Worth yesterday (her original ENT doc retired last year). This doctor was very concerned about her hearing and this affecting her ability to learn to speak. So, he has ordered tubes again. This time they will be placing a different style of tube that are made of a more durable material, have flanges on them (t-shaped) to secure them, and will last much longer than the regular type. There is a larger chance of having problems resulting from these tubes like perforation or scarring, but the doctor reassured us that this is the best route for Whit right now. He warned that she will most likely need tubes in her ears for a very long time and these have a better chance of staying put for a while. While he is in there he will be draining the large amount of fluid behind both ear drums and checking to make sure everything lines up like it should, especially in relation to her sinuses and cleft repair.

The surgery is scheduled for next Tuesday at Cook Children's in Ft. Worth. Whit has had all of her surgeries at Cook and we feel very comfortable there. We will be speaking with the Anesthesiologist on Monday to decide what route to take with her medications and blood pressure regulation. There is always a higher risk with operating on kids that have hypertension, so I am anxious to see what they say. It's possible that we may have to stay overnight if anything arises. BUT! We are hoping for a smooth, easy surgery and recovery. Most likely we will be able to come back home the same day.

Whitney has been doing well with all of her therapies and is now functioning at about a 12-month-old physical capacity. She is getting closer to walking, but still isn't quite steady enough to take off on her own. She is getting around great with her gait trainer/walker though. And she loves to walk. We try to allow her to use her walker as often as possible.

She is still not eating age-appropriate foods, but we have graduated to blended/pureed table foods! She no longer relies on jarred baby foods. She is able to eat just about anything we eat as long as we blend it well to a smooth texture for her first. She is also finally able to eat Cheerios! She still does not use her teeth or tongue, so there's not much chewing or maneuvering going on, but she can eat them by allowing them to get soggy enough that they dissolve. This is a huge step for her. She has the ability to pick up foods and place them in her mouth, but she is still unable to swallow them if they are not mashed up first. We are still working through the gagging thing too. She gags a lot and I've come to my own conclusion that her cleft repair, although perfectly pieced together, is just taking away the sensations she needs to feel foods touching her soft palate. She does not have a uvula, so I really believe that her gag reflex is what keeps her from swallowing foods that are too big to digest.

We are also still working hard with trying to get Whitney to talk. She is still stuck with only "Mama" and "Nana" (meaning dada!). However, she is fluent in baby signs and still understands EVERYTHING we say to her! She is a very smart little girl and can follow a story, follow directions, and she lets us know exactly what she wants. She also has a very sharp memory. She can be told something once and remember it exactly the next time it's presented to her. In fact her memory is so good I tease that she's my little elephant!

I will try to update as soon as possible after Whit's surgery on Tuesday.

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!!! :)