October 14, 2013

Pneumonia


We are back in the hospital.

Will had a routine clinic visit on Friday. When his nurse practitioner walked in with his labs, I knew something was "off". Will's labs were indicative of some type of infection - his white count was extremely high as was his ANC. However, he wasn't have any symptoms so we went home with instructions to keep a close eye on him.

In typical I-won't-be-sick-until-we-get-home fashion, Will spiked a temp of 103 the second we made it home from Texas Children's. We headed right back to the hospital and Will was admitted. His fever was extremely high Friday night (nearly 105) which prompted the doctors to take chest x-rays Saturday.

I'm so glad we did x-rays because Will does in fact have pneumonia. We aren't sure if it is bacterial, viral, or fungal so he is currently being treated with antibiotics (6 difference antibiotics, some IV, some oral) and antivirals. We are waiting on viral and fungal panels to see if meds need to be adjusted.

Will fever persisted Saturday and into Sunday but thankfully he spent most of the day Sunday fever free and it was looking like he would be discharged today (Monday) and sent home on oral antibiotics and antivirals. Unfortunately he spiked a fever again last night and we will not be going home until Wednesday at the earliest.

He has been fever free all day today which is great but due to the length of his high fever, the doctors want to see him fever free for a longer period of time before discharging us. If he has a fever tonight or tomorrow he will go for full body CT scans to see if we are missing anything major going on in his body. In theory, he shouldn't still be having high fever after the amount of meds he's had pumped into his little body which has his primary BMT doctor wondering if there is something else going on.

Pneumonia is never good for little babies his age but it is really not good for bone marrow transplant patients. We are praying Will can overcome this setback.

On top of the stress of a major medical issue with Will, we are now trying to figure out how this will impact our trip to Minneapolis to meet Kate's donor. Alex, Kate and I had plans to fly out Friday morning but at this point we are unsure who will be able to go.

Kate will be there. And she WILL meet Lance. We just don't know who will be with her.

If you don't mind, please pray for my momma heart. I am experiencing immense amounts of mom guilt right now. I feel like the worst mom for even considering leaving Will here in Houston (he will be in great hands with my in-laws) seeing as he is so sick. But I also feel like the worst mom ever for considering missing one of the biggest/ most important moments of Kate's life. I am prayerfully seeking guidance but I feel like I need a neon sign to appear telling me what to do.

And let's all rally together and pray for Will's health. Depending on the type of infection (bacterial, viral, fungal) Will could be facing months of IV treatment to recover. We need this to be a quick, easy fix so that he can continue on his road to recovery!

Thank you for all of the Facebook, Twitter, and InstaGram love y'all have sent my way these past 4 days - I know your support is what is getting us through this obstacle!

October 10, 2013

Children's Museum Fun!!!

One of the hardest aspects of Will's isolation has been Kate's adjustment to not being able to leave the house with her entire family. She just doesn't quite understand why Alex and I cannot always take her places together. Because she is trapped in the house so much, we make a point to take her out on fun excursions every weekend!

A huge perk to living where we live is that we are only 10 minutes away from the Houston Museum District so the Houston Zoo, Museum of Natural Science, Children's Museum, etc are all so close to our house!

We've avoided the Children's Museum until now (hello germy kids) but Alex finally took the plunge a few weeks ago and he and my in-laws took Kate. She was bathed, had her clothes changed, and covered in hand sanitizer the minute she stepped foot back into my house and touched anything. But, she did get the chance to go and have fun!

This past weekend was my day to take Kate out for some fun! She picked the Children's Museum again (she always gets to pick what we do) and I was excited to take her as I've never been. I grew up in New Orleans and spend many Saturdays at the NOLA Children's Museum with my family so this was a very sentimental outing for me!

We didn't get to see the entire Museum but we did have a lot of fun! Kate is still a bit overwhelmed in crowds. I'm not sure if it is just a phase or if she is hesitant to be around tons of people because she spent the first 2 years of her life on isolation. Either way, she avoided the extremely crowded areas which was perfectly fine by me! My anxiety regarding bringing something home and Will getting sick is so incredibly high that avoiding crowds is exactly what I want to do too!

I was so glad that the vet area of the Kids Town wasn't packed as Kate adores animals! She had so much fun assessing her kitty!

Can we take a second to admire Kate's hair? I just cannot get over how long and beautiful it is! I mean less than 2 years ago she was still completely bald! Her hair is such a visual reminder of her healing!

After playing vet we headed to the water play area! One perk of 90 degree weather in October is being able to get totally soaked and have a blast outside! Kate loves water and played outside for nearly an hour!

We headed back inside and did several more things before heading to the bottom floor and hanging out in this cool room where you can build things - rockets, paper airplanes, lego cars, etc. There are wind tunnels, rocket launchers, and car tracks to test out all of your creations! Kate and I made a really cool parachute out of coffee filters, bathroom cups, and popsicle sticks and it actually flew in the wind tunnel for about 5 minutes! I got a good giggle out of all of the engineer dads that were totally into making the perfect rocket that would launch the farthest!

After testing out her parachute and lego car, Kate spent a while building a "really tall castle house" out of jacks and straws! I am so amazed by her little mind. Witnessing her thought process as she figured out how to do what she wanted to do was amazing!

While I cannot wait until we can resume activities with the entire family, I really am enjoying all of the mommy daughter dates Kate and I have been on recently!


October 7, 2013

Glimpses of Normal


Last week was so incredibly good for my soul.

There's no denying that I am feeling rather trapped in our home due to Will's isolation restrictions. Simple things like spending the morning at the park are not options right now, especially as we get closer to the peek of cold and flu season. Will simply cannot be exposed to other germy kids. Add in the fact that Will can't be in direct sunlight due to the chemo he received and we are quite literally trapped inside day after day.

Thankfully, Will was cleared to go on neighborhood walks without his mask! When I heard the news in clinic, I was elated. It is just too hot here in Houston for him to have his huge mask on while in the heat which meant we didn't take him out often. Last week I started watching our driveway and backyard to see when they were shaded so Will could go outside!

We have about 30 minutes of shade out front every afternoon and you better believe we took advantage of it this week! I cannot even describe how much fun Will had running around our driveway. He was so excited to be outside!

Kate also enjoyed a bit of freedom as she was able to ride her big wheel down the sidewalk!


We are still living the hustle and bustle of post transplant life in terms of visits to the hospital. We were able to drop down to twice a week clinic visits which is awesome! Overall, Will is doing great. We just have to get his kidneys working like they should and get rid of these dang IV fluids!


I know most of y'all are sitting at home thinking "and afternoon outside in the driveway was good for this crazy lady's soul"? And while it may seen like something so small and insignificant, it feels so HUGE to me. Our life has not been normal for so long. We have gone through hell, twice, in less that 2.5 years. I have lived the majority of the past 3 years with a child in isolation. I've missed play dates, story time, and so much more because we've been completely absorbed in fighting  for our kids' lives and getting them healthy. I would miss play dates for the rest of my life if it meant both of my kids were healthy. But that doesn't make missing out on so many normal mom things any easier.

So playing in the driveway? With two kids who are either healed or recovering? Is huge.

It is the start to living a normal life with healthy kids.

These glimpses? They will soon be our norm. And I cannot wait!!!




October 2, 2013

The Waiting Room Life Saver! {Review & Giveaway}

 


By now it is no surprise that we spend several days a week at Texas Children's Hospital for Will's clinic visits. Right now we are there at least 3 days a week. It should also not come as a surprise that waiting rooms these days are filled with kids and electronics!

I know there are parents that refuse to hop on the iPad/ electronics for kids bandwagon. I am clearly NOT one of those parents! As the mother of two special needs kids who have spent countless hours at doctor's appointments and who have both lived in the hospital for months, electronics are one of my best friends. Sometimes you just have to pull up a movie, strap the kiddos into the stroller, and pray they semi behave!

Lately, I've had a big issue with Kate wanting to watch movies or play games on her iPad but not wanted to keep the volume at a waiting room acceptable level. I'm quickly learning that my child is loud. Like really loud. And she likes her movies loud too. No one wants to listen to her annoying animal key board creations as she bangs away on the iPad. I've tried ear buds but Kate simply refuses to keep something in her ear. I don't blame her as I am not a big fan of ear buds either as they tend to hurt my ears.

I've seen several kids in the waiting room with nicer around the ear headphones and thought, "hmmm, maybe that would work" but didn't want to shell out the cash if Kate would also refuse to wear them as well. Y'all can guess how excited I was when the opportunity to review an amazing pair of Monster around the ear headphones presented itself!

Alex and I were both excited when our set of Monster NCredible NTune around the ear headphones arrived. We were both wowed by the high quality of these headphones. They are comfortable, very sleek looking, and most importantly have phenomenal sound quality. I may or may not have pulled up some Brittney and had a pretty epic dance party while cleaning the kitchen the night our headphones arrived. I know, I know. Y'all are so sad that I did not include a picture of my incredible moves. So sorry!

I was immediately surprised by the sound quality. I've never "invested" in higher quality headphones and have stuck with the cheap white pair that came with my phone. I never realized just how awful the sound quality was with those ear buds until I used my new NTune headphones!


Not only were Alex and I impressed with these headphones, Kate was also a fan. I was worried that she wouldn't keep them on but, she does! Kate loves that she can tune out the hustle and bustle of clinic (or her little brother) and watch a movie or play iPad games without being scolded for the volume! The Monster NCredible NTune headphones have a super durable, flexible headband that is absolutely perfect for toddler handling! I am not worried about Kate's inability to be careful with them as they just bend right along with her manhandling!


The only problem? I can't seem to get her to take these things off! She wants to wear her "ear headband" all the time - even when we are at home (and they are not connected to her iPad)! But, you know what? I'm at the "whatever it takes to keep my threenager happy and not whining" stage of life!

With Christmas just a few months away (side note- HOW is it nearly Christmastime??), these Monster NCredible NTune headphones would make the perfect gift for so many people on your list! Whether it is for your toddler so you can have a brief reprieve from obnoxious cheerful toddler apps or your loved one that enjoys music, the NTune headphones would make the perfect gift! Especially since they come in so many great colors!



Monster and BlogHer have teamed up and will be giving away 25, yes you read that right - TWENTY FIVE, pairs of these amazing headphones to luck readers!
To win your very own pair of N-Tune headphones (valued at   $150),  read all about the Monster headphones here (linkand let me know in the comments of this post which color you prefer. The comments on this post will   be aggregated with the comments on the posts from the other bloggers   participating in this review, and 25 pairs will be given away. This giveaway   will close on Nov 1.

I can promise you that you want, and maybe even NEED, to have these headphones in your life! They really are amazing!



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