Thank you to my wonderful friend Erin for taking these pictures- I absolutely adore them!
We just got home from a 2 night stay at the hospital. Grayson, being the sweet big brother that he is, waited until after his sister’s birthday party before getting sick. This illness came out of nowhere and really took us by surprise; it just once again shows the unpredictability that is life with a medically fragile child.
Tomorrow is Ryan’s birthday. Four years ago today I found out I was pregnant, and the next day surprised my husband with the news that he was going to be a dad. Four years later, I spent the day cuddling my precious baby boy in a hospital bed, trying to keep him calm as we waited to see if he would tolerate his feeds so we could go home. He’s been battling a virus and it’s been a really rough three days on him, and on all of us.
He was started on heavy IV antibiotics, which I really struggle with. I know that if he did or ever does have a bacterial infection, antibiotics could literally save his life and prevent sepsis. However, they have to grow cultures for 48 hours to determine if it is bacterial, so giving him the antibiotics right from the start is always a “just in case” kind of thing. I hate, HATE pumping unnecessary stuff into my poor guy’s already fragile body, and actually had a conversation with Grayson’s immunologist about this a few months ago. From that conversation, I thought more individual consideration would be given this time since she said to have the ER call her, but I guess not. I did refuse to give him “just in case” Tamiflu, a decision I feel good about. It’s so hard to reconcile my intuition, my fears, and my trust in the medical team at the hospital, because a lot of times I feel pulled in a million directions.
By Sunday night it was obvious that Grayson’s little thumb just wasn’t going to support that IV for all they had to run through it (fluids and antibiotics) and the decision was made he needed a PICC line. The doctors and nurses all assumed that Grayson has had one before- nope. They were shocked. I guess it is pretty amazing that after all these hospitalizations and him being a “hard-stick” that he’s always been able to rely on regular IVs. Anyway, yesterday Grayson got the PICC line; it had to be inserted under anesthesia, so that was a whole long ordeal being taken down to radiology, putting him under, and waiting for him to wake up. Yesterday was a really long day. Thankfully, my sister in law came up to watch Grayson for a few hours and my friend who lives close to the hospital picked me up, bought me dinner, and let me use her shower. Life-saving, these people of mine.
Today was a “snow day” in our city, which really meant lots of freezing cold rain and a few snow flurries, so I guess being cooped up in a hospital room wasn’t the worst place to be. But I sure missed my Charlotte, who spent the last three days with her Grammie (in Heaven, I’m sure).
Grayson fell fast asleep as soon as we got in the car to go home and is still sleeping soundly in his bed now. Poor baby has been through so much, both in the last 3 days and the last 3 years. I told the PACU nurse that I don’t think I would be as forgiving as he is if I had to go through half of what he does. I’m praying this was just another bump in the road and we can quickly get back to our normal- whatever that is.
This morning, we had Charlotte’s first birthday party. It was such a fun time celebrating our sweet girl’s first year of life with some of our favorite people!
I wanted the party to be low stress and simple; I chose the morning so we could party hard until naptime and then put both kids straight to bed (the plan worked!)
I made this sign with all Charlotte’s 1 year “stats”. I wanted it to look like a chalkboard sign, but I did it on a black canvas with paint pens-much easier!
I also made this banner-I’m hoping to hang it in her room or bathroom
We served breakfast- kolaches, cinnamon rolls, and fruit- yum!
The birthday girl didn’t quite know what to think of all those people in her house, but she was ok as long as she was with her
When grocery shopping the other day, I happened to find these “Window Markers”- GENIUS! They kept our little party guests busy, and now we have beautifully decorated sliding glass doors 🙂
Me and my girl, munching on a kolache. I think we look a lot alike in this picture.
Listening intently to Great-Grandmommy
Big brother Grayson was right in the thick of the action, but of course had ears only for his Veggies
Birthday Cinnamon Roll- much better than cake!
And…post nap sillies. Love.
It was a great day celebrating our precious Charlotte!
This morning, I opened up my Time.Hop app to discover this post from exactly 3 years ago. Three years have passed since I “came out” on my blog that there was something wrong with our son. I read that post with sadness this morning, and with a lot of if onlys…
If only I was right back in 2011, when I hoped that the only thing really wrong with my 4 month old baby boy was his vision, and that was why he wasn’t grabbing at toys or meeting other milestones. I was wrong.
If only I was right to hope that first brain MRI on January 24, 2011 showed no abnormalities, and would have allowed us to cross that worry off our list. I was wrong.
If only those early worries about our son’s life and development were a distant memory of his babyhood. They aren’t.
If only, if only, if only.
Three years ago, I became consumed with figuring out why Grayson was different, and how to make him better, and how to care for him in such a different way than all my friends were caring for their infants. It was overwhelming.
Caring for Grayson now isn’t so much overwhelming as it is profoundly sad. Tube feeding him, holding his head while he vomits multiple times a day, pumping him full of medication three times a day, and pushing him around in a wheelchair are all, unfortunately, normal now.
Normal, but so sad. I sometimes wonder what kind of kid Grayson would be if he was developing typically and wasn’t sick. Would he be an outgoing extrovert like his sister or an introvert like his parents? At three years old, would he be playing soccer or attending preschool? What would he be “into”?
I rarely, if ever, cry about Grayson anymore, but as I write this, I have tears in my eyes. There is so much good about Grayson, so much. He has completely changed my life and my attitude and I am a better person and mother because of him. But all that comes at such a high price: his life. His life spent listening to the same songs over and over and over in the same chair with the same one toy in his mouth- day after day after day. His entire life will likely be spent as an infant: in diapers, and relying on others to take care of even the simplest of tasks for him, tasks that his one year old sister mastered months ago. It’s just not right, and it’s not fair, and I don’t understand it.
I apologize to those of you who have been waiting for an update on Grayson’s surgery last week. I’ve been meaning to write one since Wednesday but Ryan, Charlotte and I all had a mild stomach bug for a few days, which was exhausting, and then we had Charlotte’s birthday hoopla yesterday. My sweet girl had such a fun day- her daddy had off work for MLK day, so we met Grammie, Aunt Hannah and Uncle David, and “Baby Theo” (as she calls him) for breakfast. Then later in the afternoon we went to an extra music class since we’ll miss her regular class Saturday because of her party. All was great and wonderful until about 6:00 when Charlotte suddenly spiked a fever. I was thinking teething but it was a looooong night- she was up every hour until about 2:00 am screaming and was burning up. I only took her temp twice and it was 103. Poor sick bear. She’s a little better today, but still running fever and just feels crummy. We have her 12 month well-check tomorrow and I have a feeling I’m going to have to change it to a sick visit.
But back to Grayson. The surgery could not have gone better and we had a fabulous experience at UTMB in Galveston. I was so nervous about being in an unfamiliar hospital and not knowing if we were going to have any issues with them following the Mito anesthesia protocol, but the anesthesia team was totally on board and already familiar with the protocol. The surgery was scheduled for 9:00 am; we had to be in Galveston at 6:45, so it was an early morning around these parts. Thankfully, there was no traffic in Houston that early (we left at 5:30 am) and we made it there in plenty of time and had no trouble parking and getting our parking validated.
The pre-op moved quickly and efficiently. We had a room with a bed for G, so he was able to lay down comfortably while we signed all the consent paperwork and they took his vitals. They gave him a sedative about 30 minutes before they took him down to the OR, so he was chilled out by the time we saw the doctor. He was listening to his Veggie Tales on his ipad with headphones, and the doctor told us just to leave them on- so he was wheeled into surgery with Bob and Larry still serenading him (oh brother). We were so impressed that they took him back at exactly 9:00- both Ryan and I are very impressed with timeliness!
The procedure was quick- lasted about an hour, and the doctor came and got us and said it went really well. I then was taken to the PACU to wait for him to wake up. We always say Grayson takes FOREVER to wake up from anesthesia, but as he’s gotten older, the time has gotten much shorter. I don’t know exactly how long it took him to wake up, but it definitely was less than 2 hours. He woke up groggy but didn’t seem to be in a lot of pain; after a few minutes we were taken back to the floor where we started and waited to be released.
IMMEDIATELY we noticed a huge difference in the tone in his legs. I almost couldn’t believe how loose they were (are). Changing his diaper and his clothes were so easy and even picking him up was easier. Simply amazing.
We were released and were home by 3:00 pm. I can’t say enough good things about our experience- the nurses were wonderful, everything moved efficiently, and we were provided with a care packet and prescriptions all together in one place.
It’s almost been a week since the surgery and Grayson is doing really well. He’s been on pain medication but I don’t think he’ll need that much longer. His orange Childrite seat (big Bumbo) that he sits in a lot is the most remarkable- it was extremely difficult to get him in and out of that chair prior to the surgery because he would squeeze his legs so tightly together. Now, we lift him in and out with absolutely no problems (although we do need to look into getting him another kind of chair because this one doesn’t support his head at all). Diaper changes are a thousand times less difficult, and it’s a lot easier to carry him from one place to another because he isn’t so stiff anymore. His incisions are healing nicely and he will be in casts for 4 weeks. After that we will have the casts removed and his orthotics place will determine if he needs new AFOs or if the ones he has will still work.
I’m feeling so good about this and are so thankful we were able to do something for Grayson that has already impacted his quality of life so positively!
Happy, Happy Birthday to my baby girl! It really has been a whirlwind year, and I can’t believe we are already at the 12 month point in your life! What an absolutely amazing, joyful experience it’s been adding you to our family- we love you so and are so, so glad you are you!
You have grown and changed this year so very much- from a tiny 7 pound, 1 oz newborn to a 20 pound, 3 oz 1 year old! You are now 29 inches tall and are in size 12 month clothing and size 3 diapers. You have 2 bottom teeth and your hair is definitely getting longer and flipping up on the ends- adorable! You still drink three 8 ounce bottles a day and nurse 2-3 times, but are slowly starting to eat more solids to replace the milk.
I made a list of the words you can say, and there are 12 that you use consistently. You will mimic words and even phrases a lot too- I can’t wait to see how your vocabulary explodes in the coming months!
You are such a sweet little sister. Grayson is one of your favorite people and if he’s in the room, you want to be near him or on top of him. You give him hugs and kisses, talk to him, and pat his back when he’s not feeling well. I love watching you love him, even if I do have to intervene between you two quite a bit!
We are now in our new house and you have transitioned really well. You are sleeping well at night and taking good naps. You love climbing the stairs, cruising on the furniture, and sneaking into Grayson’s room to get into whatever you can!
I’ve been looking back at the hundreds and hundreds of pictures taken of you this year. Looking at you as a tiny newborn makes me wistful, but I absolutely love the little bundle of spunk that you have become. You are sassy, opinionated, sometimes exasperating, but you are also funny, sensitive, cuddly, and so, so sweet. I couldn’t love you more if I tried.
Happy, Happy Birthday sweet Charlotte Faith. I love you to the moon and back.
In ONE WEEK my daughter will be one. ONE! However, Charlotte is not wasting time diving headfirst and fearlessly into toddlerhood. Sadly, unless she’s fallen asleep in my arms right before I put her down for the night, she has no resemblance to the tiny baby who slept soundly on my chest for hours at a time less than 365 days ago.
Let’s be honest, this will be my first experience raising a toddler. Sure, I’ve been around toddlers a lot the past 3 years. I’ve read about them on blogs, seen frustrating tweets about their antics, and witnessed my friends corralling their own little people. But my own 3 year old was never a toddler. Obviously, he never “toddled”, but there’s also the fact that I never had to try and reason with him about things that were totally unreasonable, wipe his dirty bottom while he contorted himself into unnatural positions and tried to escape, have food thrown in my face or on the floor, or dealt with ohmygodistheworldendingbecauseyouarescreamingsoloud tantrums. I guess in these aspects, you could consider Grayson “easy” (ha).
So here we go. Lately, Charlotte has been giving me a preview of what’s in store for us over the next few years. And yes, I know we haven’t even scratched the surface of toddlerhood yet. Just wait until she starts walking, right? Eeeeek!
This morning, we didn’t have Grayson’s nurse, so I had to get both kids ready solo. This is doable, but difficult. Grayson’s morning routine involves a lot of medication in syringes (which you know Charlotte is very interested in), changing his diaper, his undershirt onesie, getting him dressed, refilling his feeding bag, combing his hair and putting on his AFOs and shoes. And he’s extremely stiff in the morning and can’t “help” at all, so it takes time. With no distractions or Charnado in the mix, it takes 30-40 minutes.
Enter Charnado to the scene.
I get Grayson out of bed, but him in his baby gym and turn on his Veggie Tales. He’s happy as a clam. I turn off his feeding pump and unhook the tube from the extension. Charlotte makes a beeline for the pole, pulls herself up on it, and it crashes to the ground and she hits her face on the floor. Screaming commences.
I’m giving Grayson his medicine and Charlotte is all up in our business, trying to help. She takes each empty syringe one by one, and either puts them in her mouth or tries to give them to Grayson in his button (smart girl). When she’s tired of that she crawls over to the pole again, grabs the hanging tube, flings it, and formula starts flying all over the room- aaaa! I take it away from her. More screams.
I then go to change Grayson’s diaper and Charlotte, once again being a big helper, starts pulling the wipes out of the box one by one. Then she decides that Grayson’s face needs a cleaning. He LOVES that (sarcasm font). I remove her from his presence. Screaming.
Charlotte finds my purse on the couch and empties the contents all over the floor. She takes all the cards from my wallet one by one and tosses them around the room and under the couch. Then she finds some homeopathic flu beadlet things in a container and starts shaking it like it’s a maraca at music class. I let her do it.
While I’m putting Grayson’s clothes on, Charlotte decides the socks that have been on her feet for the last hour are no longer acceptable and frantically tries to pull them off. They are the good kind that don’t come off (ha) but again, this causes more screaming.
I put Grayson in his orange chair to comb his hair. Charlotte wants her hair combed too and she thinks it’s hilarious that I alternate between combing her hair and Grayson’s. It’s pretty cute, until she decides she wants to do it herself and starts combing Grayson’s face.
Grayson starts throwing up. While I’m holding his head and a towel underneath it to catch the vomit, Charlotte takes this opportunity to pull up on her brother, laugh manically, and pull his hair.
I then put Grayson in his beanbag chair. Charlotte races over and climbs on top of him and starts bouncing and saying “Hi Gray Hi Gray”. Adorable accept for the fact that my poor defenseless boy is totally getting pounded on his stomach, just moments after vomiting.
At this point, I’m feeling a tad exasperated with her but I consciously make a huge effort to control my emotions- this is, after all, normal. And after Grayson, I will forever be thankful for normal. So instead of saying “No” for the hundredth time in 30 minutes, I put Grayson’s headphones on him, scooped Charlotte up, and I turned on a praise song I downloaded yesterday after hearing it at church. We listened to that song 3 times and danced around the living room. It was fun, calmed us both down, and gave poor Grayson a break from his sister’s relentless “affections”.
These are the words to the song I played:
What can I do but thank You,
What can I do but give my life to You
What can I do but praise You,
Everyday make everything I do a hallelujah
A hallelujah, hallelujah
Because really, what can I do? Not much about Charnado, evidently. But I can be thankful and praise God that she is who she is, a sweet, precious, healthy whirlwind of an almost-toddler, who surely is going to make life very interesting in the years to come.
I love this girl.
The quilt on the bed (where Grayson’s nurse sleeps) is a hand-me-down from my friend- I love giving and receiving hand-me-downs; sometimes they are better/more special than brand new! My mom bought him the blackout curtains for Christmas and G’s been napping great because we are able to keep the room so dark. The alphabet picture on the wall was a gift from the same friend as the quilt.
This built in bookshelf may look a little cluttered, but everything on it has special significance and I love that all the items represent a special part or time in Grayson’s life. Below the shelf are cabinets where we are keeping all his medication and medical supplies: feeding bags, syringes, etc. I love that it’s all contained in one place and we can prepare his meds right in his room.
This quilt that hangs on the back of Grayson’s bed was his Christmas present from his Aunt Robin. It’s so beautiful, and of course includes his beloved Veggie Tales. Robin also made quilts for me and Charlotte- she is so talented and we love them (and her)!
I had the picture of the beads Grayson received at the Beads of Courage event printed on a canvas and framed the invitation- they are hanging right over the head of his bed. That was such a special night and I love having a reminder of it every time I go in the room.
Grayson’s nickname he was given at 5 days old that definitely stuck.
This is a little part of the room devoted to two of the most special gifts Grayson has ever received, based on the poem “Welcome to Holland”. If you haven’t been reading my blog long, go read this post about the picture- it will give you chills. The wooden shoes were a Christmas gift this year from Grayson’s Aunt Brittany. They are actual wooden shoes from Holland and she had an artist friend personalize them just for Grayson. I could not possibly love them more.
This is Grayson’s shower- I’m showing it because it’s definitely a miracle that his chair just barely fit!
I saw this sign at Hob.by Lob.by a few months ago and knew I just had to have it for Grayson’s room.
I meant to take a few pictures of the actual human who lives in this room, but I forgot at bedtime and I don’t want to risk waking him. I’m sure there will be plenty in the future though- hoping for many happy days ahead!
SRB is hosting a challenge this winter focusing on CLUTTER. Oh my, do me and clutter have a history. This challenge actually comes at the perfect time since 1. we just moved and have already gotten rid of a huge percentage of our belongings and 2. it’s January, and I’m super motivated to take charge of several areas of my life.
Stuff suffocates me. I definitely have a physical reaction to clutter; my blood pressure rises and I sometimes feel like I am having an anxiety attack when confronted with it. However, I don’t think I’ve had the skills or true motivation until now to truly simplify and consistently deal with it. But I really want to change that. I have a medically fragile 3 year old who requires round the clock care and an almost 1 year old on the verge of toddlerhood who requires um, a lot of time and attention. I’m working on my marriage, my friendships, and the health of my family. These are my priorities. I simply do not have time for a ton of extra stuff that for the most part just drags me down.
I’m sentimental. I have a hard time letting go of personal items, like pictures, cards, journals, etc. Thankfully, most of these things are now digital, stored neatly on this laptop. I love my kids’ teeny tiny baby clothes, but I’ve found I get so much joy from passing them down and seeing new babies wearing them- much more than when they just sit in a closet, taking up space. I’ve relentlessly parted with toys, most of them toys that Grayson never played with. Some of them Charlotte is now playing with, but especially since we have downsized in square footage, I just don’t want a lot of extra toys just laying around. Charlotte much prefers to play with medical supplies and iphones anyway!
I believe I’ve done a really good job at cutting out the unnecessary stuff that we just don’t need, but now I need help managing the stuff that’s hanging around. For the challenge, we are supposed to post pictures of the areas that need attention- as is, no straightening. I’m posting a picture of our “pantry”- we no longer have a walk in pantry, which I think may be a blessing in disguise. With a huge amount of space to store food (and in our case, totally random items we seldom if ever used) our pantry in our last house was a nightmare. I really want to keep the cabinet we are keeping food in organized, neat, and cost effective.
I’ve gone grocery shopping once in the week we’ve lived here, and honestly, I just threw everything in the cabinet. Here is its current state:
Yes, I know. BAD.
SRB challenged us to really look at the photo(s) we post and think about the EMOTIONS they bring out. This pictures accurately depicts how I feel about my ability to feed my family: CHAOS! I don’t know if any of it has to do with Grayson and his journey to being exclusively tube fed, or just my feelings of inadequacy when it comes to shopping for and cooking good meals. In any case, the clutter in this cabinet is telling.
And I want to change it.
Welp. It’s nine days into the new year, and I haven’t forgotten my goals for 2014 yet and still feel what I think is an acceptable amount of motivation. I’m not dead, so that’s something (see Goal #1).
I guess our biggest accomplishment so far this year is we have officially moved. Part of me thought it really was never going to happen, but it did, and it’s actually been a nice, smooth transition so far. We’ve had a few unexpected expenses- that is how we roll, after all- but I’m trying to just roll my eyes instead of freak out at the fact that our TV broke in transport and our dryer is gas and this is an all-electric house, so we’ll have to get a new one. I do get a little rage-y, however, when I think about the fact that we had to pay our $500 deductible plus part of the cost for a rental car to get my van fixed for the accident that wasn’t my fault. The police report said it was unable to be determined who was at fault, event though the other driver admitted fault at the scene before the police got there. Ugh. I guess I should be thankful that I now have my car back, and this whole mess is over.
The kids have transitioned well. We’ve been in the new house since Saturday, and Charlotte has had some random meltdowns and has been a little more clingy than normal, but overall is doing fine. Grayson hasn’t seemed to be affected negatively at all- and he loves his new bed. My favorite thing is I can actually climb in his bed and snuggle with him- something I’ve never been able to do before! I am still waiting to hang a few more things on his wall and I will post pictures of his room.
The food situation is good right now. Food, I’ve discovered, really stresses me out. I feel so much pressure when it comes to feeding Charlotte the right foods, and being consistent about it. Ryan and I are doing a 30 day challenge where we are drinking 2 meal replacement shakes a day and then eating a healthy dinner. My friend brought us groceries to make several dinners as a house warming gift (the best!) and I did go to the grocery store with Charlotte on Tuesday for meals for the rest of the week. I just need to keep at it and be consistent- I can do this! It really helps that Charlotte is a really good eater (I can’t say enough good things about Baby Led Weaning) and will eat anything we put in front of her.
The next few weeks are going to be a whirlwind- Grayson has an appointment tomorrow with his Mito doctor and his surgery is next week. And in 11 days a certain little miss will be turning ONE! I have so many thoughts and emotions about this and should really devote a whole post to it, but it’s just so amazing to me how quickly babyhood goes. It truly has been in a blink.
So that’s life at the moment. I’ve been staring at this post for awhile now thinking well, this is kind of boring. But right now, that’s a good thing. Boring is GOOD!