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.