December 9, 2013
But, we've had big things happen over the past two months and have BIG things coming in the next few months!
So what have we been up to?
*If you follow me on IG, you know that I've recently started on a new health/ fitness journey. After feeling unhealthy and blah for months I am finally putting my health as a priority and have been regularly working out for about a month now. I'm averaging about 15 miles of cardio a week (not huge but it's better than nothing) as well as some very minor strength training. I'm hoping to start a class like BodyPump or something similar soon! I am just so intimidated by those types of classes for some reason! I've also revamped my diet and while I wish the number on the scale would drop faster, I'm feeling so much more energetic these days!
I'm certain I will have lots to blog about as we prepare to list our house, start looking for a new home, and finally make the move to the burbs!
Now, let's hope I can take these snippets of our life over the past few months and actually blog about them!! I really do miss the outlet of writing and updating. I have so many thoughts floating around in my head and I truly hope I can prioritize my time so that blogging can fit back into my schedule!
November 18, 2013
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October 14, 2013
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
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
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
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 (link) and 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!
September 30, 2013
UPDATE: DUE TO DEMAND, MIMI IS NO LONGER TAKING ORDERS. IF YOU ARE INTERESTED IN BEING PLACED ON A WAIT LIST, PLEASE SEND YOUR INFORMATION TO THE EMAIL ADDRESS LISTED BELOW. YOU WILL BE NOTIFIED, AND INVOICED, AS SOON AS YOU ARE MOVED OFF OF THE WAIT LIST. MIMI WILL OPEN ORDERING UP AGAIN AS SOON AS SHE IS CAUGHT UP!
A few months ago I posted a picture on FB and IG of the amazing princess aprons my oh so creative momma made for Kate's birthday. People went nuts! Like over 100 people asking how to order! I quickly told my mom she was a creative genius and needed to think about selling her one of a kind creations!
Well my friends, the time is NOW! Mimi (my mom) is in business! Pictures, details, pricing, and order instructions are below!
These aprons are so much fun for little girls! Kate isn't a big fan of dress up clothes right now because she says most of them are itchy. But these aprons? She is obsessed and wears them non-stop. In the past two weeks I've taken Ariel and Cinderella to the park!
Happy shopping ladies - these would be the perfect Christmas or birthday gift! Or a just for fun pressie! No matter what the occasion, I promise you your princess NEEDS a few, or all, of these precious dress up aprons!
September 26, 2013
*Will is still recovering and has run into a few complications. His kidneys are still very unhappy which has resulted in the return of IV fluids 12 hours a day. He has also been dealing with a cough/ cold that is apparently making its way through all of greater Houston. On top of all of that, he started vomiting yesterday and hasn't stopped. We are hoping that the vomiting is just a fluke and is not the beginning of graft verses host (a post BMT complication). Despite all of the vomiting, he still looked pretty dark cute at clinic today (in outfit #2 thanks to getting sick). He's also sporting some killer cyclosporine hair! Will's immune suppressant causes hair growth in odd places (eyebrows, forehead, back, etc) and his eyebrows just keep getting thicker and thicker! His ears are also super hairy!
*Kate is a hot mess. I think three is the hardest age so far. Terrible twos have NOTHING on threenagers. NOTHING. While we have incredibly sweet moments, we also have moments that make me want to pull my hair out and run away. My inlaws were in town this past weekend which was great but y'all. Grandparent detox is no joke. Those of you without kids might be curious what grandparent detox is.
Grandparent detox can be described as the period of meltdowns immediately following grandparents returning home. Excessive whining, due to no longer having two adults doting over you 24/7, breakdowns for no apparent reason, and abnormally high levels of violence are common side effects.
*Alex, Kate, and I are all getting very excited about our trip to Minneapolis! I am a mix of excited and nervous over meeting Lance! I just don't know what to expect when we finally get to meet him. I mean what do you say to the person that saved your daughter's life? Ahhh!!! I will be documenting our trip and using #Katemeetshermatch on Twitter, Facebook, and Instagram for those of you that want to follow along! We fly out October 18!
*Kate had an amazing Minnie Safari birthday party. And one of these days I will actually blog about it.
*The kids were feature in a news story again! Be the Match held a walk for the kids on the BMT floor the week before the Houston Be the One Run. Houston's abc13 was on the floor and covered the event! We were so excited to run into Christi Myer again and follow up regarding Kate and Will! Christi filmed our family last fall so it was wonderful to update the community! Here is the story!
Celebrating the gift of life | Video | abc13.com
*For those of you that follow me on Instagram and FaceBook you've already seen this! But, my mom made the most amazing birthday gift for Kate! She created these precious Disney Princess dress-up aprons (from scratch - she created the patterns as everything)! Mimi has decided to sell them and I am hoping to have a post up tomorrow or Monday with details. She has been working hard creating wonderful dress-up aprons for your princesses and is looking forward to selling her creations! Keep your eyes open for the Made by Mimi post so you can place your order!
For those of you not up on your Disney Princesses, we've got (from left to right) Aurora (Sleeping Beauty), Snow White, Belle, Cinderella, Ariel, and Rapunzel! Tiana and Jasmine have also recently been added to the collection!
Hopefully y'all will hear from me very soon! I've got Made by Mini, Kate's party, and an awesome review/ giveaway that should be up within the next week!
September 11, 2013
That's how I feel these days. Like there is no way I have enough in me to make it through another crazy day much less another week.
Things have been more hectic than normal over here. Will was readmitted to the hospital last week for two days due to a fever. Thankfully it was a quick stay. But it was time away from the house, away from my to-do list, and away from our normal routine. On top of his third hospitalization, we literally spent all day at the hospital Monday due to Will's kidney issues.
All of this, on top of normal every day life, has me running on fumes.
Y'all I am flat out exhausted.
My house is a wreck. My to do list is a mile long. I feel like I am failing at accomplishing anything other than barely making it through the day.
I know this is just a season of life. And that the days are long but the years are short. And in a few years I will look back on this challenging time and feel victorious about surviving.
I'm sick of this season.
I'm sick of the hospital.
I'm sick of being trapped in the house all day long.
I'm sick of not being able to do things as a family of four since Will can't go anywhere.
I'm sick of not being able to see my friends because they have kids in daycare/ preschool and could pass germs our way.
I'm sick of feeling like I'm not cut out to be the mom of two special needs kids.
I'm sick of feeling defeated.
I know we will make it out of this season of life stronger. I truly do know that.
But right now?
I just want to crawl into a hole and hibernate until our season of health arrives.