Tuesday, July 21, 2015

Getting the Genetic Test Results Back

8 weeks ago, I held my screaming son down on a table as two lab techs drew a vial of his blood.  Per his geneticist, we were having him tested for a newly found connective tissue disorder called Loey's Dietz Syndrome along with an array of other connective tissue disorders.  Everything fit and the diagnosis would explain everything that's gone wrong since his birth.

Today, I received a call from Little Dude's genetic counselor with the results of the test.  I held my breath, knowing that no matter what the result was, I would be crying as soon as I hung up the phone.  Crying from relief that we had an answer and sorrow that my son had a genetic syndrome. Or crying from relief that he didn't have a connective tissue disorder and disappointment because we still wouldn't have an answer.  Either way, I knew it would be bittersweet.

The results were negative.

The geneticist didn't recommend any other testing at this time, but wanted to continue to follow Little Dude clinically.  And that was it.   I hung up the phone and cried alone out in the garage where the kids couldn't follow me.

We've spent most of Little Dude's life waiting for the results of different genetic tests he's had done, all with negative results.  This time though, we thought we might finally have an answer, a name to put to whatever it is that has wreaked havoc in my precious baby boy's body.  We thought that the uncertainty of his future would be replaced by certainty or at least become a little more clear. 

I used Facebook to write a targeted update to the family and close friends who have been waiting for results right along with us.  For them, negative tests results are a reason to rejoice, and understandably so.  But for me, it means something different.  It means that that heavy suitcase of wondering, waiting and wishing for an answer, the suitcase that I was hoping to finally set down, is still mine to carry.  And now, I have to carry it farther than I thought I would.

This test was bigger than just Little Dude.  A few months ago, I wrote down all of Little Dude's symptoms and diagnoses only to realize that Little Man has or had ALL of them as a baby to a slightly lesser degree.  Not only that, but Hubby does as well.  A positive result would've answered many questions for all three, not just Little Dude.

Right now, Little Dude is doing amazingly well.  Developmentally, he's at about a 10-11 month level and is making progress.  He's 100% orally fed and only uses his G Tube for his meds in the morning and evening.  Due to slow weight gain and some weight loss, we've added a can of Pediasure to his diet each day and that has been helping.  He's been fairly healthy with only several minor colds and a couple of ear infections over the last few months.  He's outgrowing his tracheomalacia, his heart is healthy and he will probably outgrow his murmur on his own, and his GERD seems to be under control.  He hasn't needed a nebtreatment in a while and hasn't had pneumonia for about 6 months now.  He's a happy little boy who brings me so much joy that I just can't stop myself from scooping him up and squeezing him somtimes.

So where do we go from here?  Well, we keep treating symptoms and hopefully, we'll see Little Dude continue to improve.  And maybe someday in the future, we'll have an answer, but that day is not today. 

I'm going to leave you with a picture I took of Little Dude last night because...well, it's cute :)




Tuesday, July 14, 2015

I'm Still Here!

I haven't blogged in a month and a half, I missed Little Dude's 15 and 16 month updates, and I haven't even started adding all of my new products to my Etsy shop. 

The reason for my absence?

Summer.

Do you remember the summer bucket list I wrote?  I've been focusing on enjoying my children instead of constantly worrying about the things on my to-do list.  I've semi-unplugged, evidenced by the lack of activity on my blog.  You can still see updates on my family on Instagram though!  It's been a good summer-the first good one in three years.  

Here are some updates on the family...

Princess: She's been reading like crazy which is awesome to see since she struggled so much with it during the school year.  She's in the lead for her age group in the summer reading program at the library.  She also just learned how to ride her bike without training wheels.  It took her about 5 minutes to figure it out after the training wheels came off. 

Little Man: He loves riding his bike too although he's not quite ready to lose the training wheels yet.  He's already got a farmer's tan and jumps at the chance to go farming with Daddy.  He's starting to figure out how to sound words out and asks me almost everyday if he can go to school yet.  He's very excited to start kindergarten in the fall!

Star: This kid...she's the cutest, most angelic looking child with her blonde ringlets and big blue eyes.  Don't let that fool you.  She's a firecracker who never stops moving.  She refuses to go potty on the big potty and won't give up her diapers.  She LOVES playing outside and is pretty good about following the rules.  Her favorite activity is swinging.  She's still only 24 pounds at 2 years, 10 months old and we're trying to put some weight on her, but she's just a tiny little thing. 

Little Dude: He's been so active that I think that's part of the reason why he has been having problems gaining weight lately.  He learned how to pull himself up to standing when he was 15 1/2 months old and learned how to crawl on his hands and knees the day he turned 16 months old.  He's had a few small colds and fevers, but nothing serious.  He can drink out of sippy cups, but because he hasn't figure out how to tip a cup up yet, he uses straw sippy cups.  He's officially done with bottles and hasn't needed a tube feeding since March 28th!  He only had two doctor appointments during the whole month of June and one this month so far.  It feels so strange not to spend half our time at the clinic and hospital!

Hubby: Nothing really to report here.  Farm, work, sleep, eat.  That pretty much sums it up :)

Me: I've been having fun coming up with new applique designs for my Etsy shop and designing fabric for my Spoonflower shop.  Other than that, I've been chilling with the kids, keeping up with housework (never-ending!), and hanging out with other mom friends.      

And of course, a few random pictures to round out this post...     

Princess learned how to weave potholders on her little loom.

60 mL syringes (leftover from Little Dude's tube feeding supplies) make great water guns!

Precious little baby feet




Thursday, June 4, 2015

2015 Summer Bucket List

Two years ago, I made a summer bucket list with a ton of fun activities to do with the kids.  I felt bad because the summer before that (2012), I was very pregnant and miserable and didn't do ANYTHING fun with the kids.  Little did I know that less than a month after putting together our 2013 summer bucket list, I would be in my first trimester with Little Dude which meant that I spent the whole summer nauseous and sleeping.  The next summer (2014), Little Dude was...um, difficult to care for, to say the least, and survival, not fun, was on the top of my list.

This summer, I'm not pregnant, not going to get pregnant (No, really, I mean it this time!), and Little Dude is SOOO much easier to care for than last year. 

I decided to take the plunge and put together a 2015 Summer Bucket List for our family.  Without further ado, here it is....


1. Have fun.

2. Have fun.

3. Have fun.


And that's it.  No big aspirations.  No big plans.  No guilt when things don't go as planned.  No expectations other than to have fun.  I just want to enjoy time with my kids.  With all of Little Dude's needs and medical appointments, the three older kids have been somewhat on the back burner for the last year, and I want to make up for that simply by spending time with them as much as I can. 


This summer we will go on walks, play at the park, get out the bubble machine, splash around in our plastic wading pool, and have fun.  If we are able to, we might go to the zoo or a museum or we might not.  This year, the emphasis is on the quality, not quantity of experiences.


What plans do you have this summer?   



Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!
 

Thursday, May 14, 2015

Little Dude - 14 Months

Age: 14 months


Weight and height: 19 pounds and 29.5" tall.


Wearing size: Size 3 diapers and 12 month clothes. 

Likes: Baths!  He learned how to splash in the bath right before his surgery in March and gets excited when I start getting the bathtub ready for him now.  He loves playing with the big kids and tries to follow them around.  He LOVES being outside and cries when the other kids go outside without him.  If they leave the door open, he'll hightail it over there to try to get outside.   

Dislikes: He begs for food now and hates it when we don't share what we're eating with him.  Because he still chokes easily and can't have dairy yet, we can't always share, but I try to find something on my plate that he can eat.  

Eating habits: His feeding skills have doubled in the last month!  Things he choked on a few weeks ago, he's able to handle just fine now.  He eats EVERYTHING by mouth, and the last time I tube fed him was March 28th!  He passed a swallow study with four different textures and thicknesses with flying colors last week so we have no concerns.  He hardly throws up anymore, and I think his reflux has improved.  He eats three meals and one snack a day and is even using a straw sippy cup!  He usually only drinks 1-2 ounces from it, but the other day, he drank all 5 ounces with no problem so we're on our way to phasing out the bottles.  He loves baby food pouches and I use them to supplement his diet after offering him table foods as he's not always able to eat enough of those in one sitting.
   
Last month, his GI and allergy specialists okayed him to eat gluten which has been great.  He loves crackers, bread, and pasta and the gluten free versions of those foods had a texture that he often choked on so being able to eat gluten has really opened up a lot of things for him.  We'll be introducing dairy to his diet too soon. 

Sleeping habits: He's been starting to phase out morning naps.  He still needs them about half the time, but I learned quickly that if he fights the morning nap at all, he won't take an afternoon nap so I've been watching his cues more closely to determine if he should lay down in the morning or not.  He hasn't been waking up quite as often at night and is down to 1-2 times.  That's not a big deal because all I have to do is give him back his pacifier. and he goes right back to sleep. 

Milestones: He learned how to army crawl up and over things such as the shelf on our end tables and is able to get up on his knees or into a sitting position when he's propped up a little bit.  Still not crawling on his hands and knees, but thanks to his protective belt and cloth G Tube pads, we've been able to avoid irriation on his tube site lately.  He's able to lean on something and stand for a few seconds at a time if I put him in that position.  He even was able to get himself in a partial standing position (leaning onto the seat of the chair with his legs straight) when he tried to climb up on our fisher price toddler rocker.  He's also turned into a little chatterbox which is adorable even though he doesn't say any actual words yet.  He says "mamama" when he's upset so I think maybe he's referring to me, but I haven't seen conclusive proof of that yet.
 
    
Miscellaneous: Around 7-8 months, Little Dude got 6 teeth in all at once and then didn't get any more for a long time.  Last month though, he finally started teething again-10 teeth all at once!  He now has a full mouth of teeth.  It was a little rough for a couple of weeks when he had so many teeth popping through the gums at the same time, but we survived and he's back to his happy self now :)  He has turned into a drool factory though!

Developmentally, Little Dude is still 4-5 months behind, but he's making amazing progress and his fine motor skills are right on track.  His therapists, his doctors, and I are all blown away by how fast he's progressing on some things.  I just have to keep reminding myself that although he's still not even close to walking, he'll get there in his own time.




Thank you for stopping by my blog! I appreciate each of my readers and would love to connect with you on Facebook and Instagram!

Saturday, May 2, 2015

Introducing the New Annalie's Baby Boutique Product Line!

I had so much fun coming up with my new product line and am looking forward to adding new prints to it soon!  I will be posting these to Etsy and Instagram tonight and they're already available for ordering on my Facebook page.  There will be some special deals and a giveaway on Instagram and Facebook so be sure to join us over there!

This post is going to be a little picture heavy so without further ado...here it is!

Organic knit personalized receiving blankets with your choice of a matching knit hat or headwrap (not shown.)
Can be personalized with any name, colors, font, and choice of graphics
$45





Organic knit personalized heart leggings with your choice of matching hat or headwrap (not shown)
Available in sizes 0-3 Months through 6 years
Can be personalized with any name, colors, font, and choice of graphics Leggings with matching hat or headwrap: $45
Leggings: $40
Set of two headwraps, hats, or mix and match: $24 




Organic knit personalized butterfly circle skirt with your choice of matching hat or headwrap.
Available in sizes 0-3 Months through 6 years
Can be personalized with any name, colors, font, and choice of graphics
Circle skirt with hat or headwrap: $45
Circle skirt: $40
Set of two headwraps, hats, or mix and match: $24 
 









 

Sunflowers receiving blanket and matching headwrap or hat (not shown)
Made from a soft stretchy knit so it's perfect for swaddling.
$36 for both
$28 for the blanket
$9 for the headwrap or hat




Arrows knit leggings with your choice of matching hat or headwrap.
Available in sizes 0-3 Months through 6 years
$36 for both
$28 for the leggings
$9 for the headwrap or hat










Colorful birds knit circle skirt with your choice of matching hat or headwrap.
Available in sizes 0-3 Months through 6 years
$36 for both
$28 for the skirt
$9 for the headwrap or hat




So My Sister Got Married...

My baby sister got married yesterday. 

I wasn't invited.

Yes, we're getting along just fine (we went shopping for a dress for her wedding the day before she got married.)  She and her fiance had a very small ceremony at the park with a justice of the peace.  They each had a witness to stand up for them, and both sets of parents were there.  They plan to have a simple reception at a later date to celebrate their marriage with friends and family. 


When she married her husband, my sister followed in the steps of my older sister and me by marrying her first boyfriend. 

They kept their wedding a secret until the last minute from everyone except for a few close friends and family.  The reactions they've received since letting the cat out of the bag have been good overall, but there were a few people who were horrified at the way the wedding was done. 

I'm proud of my sister for doing things the way she wanted to do them and not giving into society's pressure to spend a ton of money on a big wedding.  She and her fiance decided that the most important thing was the marriage, not the wedding, and that's something that gets confused quite a bit nowadays.

Congratulations to my baby sister...I'm still having a hard time believing that she's married now...maybe it's because I didn't get to actually see the wedding?

Anyways, I'm thrilled for her and her new husband and can't wait to see them when they get back from their weekend honeymoon.              



Friday, April 24, 2015

10 Must Have Baby Items

This post contains affiliate links.  Purchasing something from one of the links does not cost you any extra, but it helps support this blog.  All products in this post are highly recommended by me and, I did not receive compensation for promoting them.

I've tried many different baby products over the last 7 years and 4 babies.  This is a list of 10 items that I would definitely buy again if I had the chance.


Fisher Price Space Saver High Chair

We didn't have any room for a high chair at our old house so I had to get a space saver instead of a traditional high chair.  I'm SOOO glad I did!  It reclines back for young infants, has a 5 point harness, straps onto a chair easily, and the tray slides close enough to the baby that they can't climb out.  The cover wipes clean and can easily be removed to throw in the washing machine.  It also converts to a booster seat although with 4 kids in 7 years, I haven't had the chance to try out that feature yet.  Traditional high chairs with the same features are often twice as expensive as the space saver high chair.



Mam Pacifiers

These are hands-down my favorite pacifiers.  I tried quite a few different ones with Princess, but these were the best.  They come in tons of cute designs and were the only pacifiers that didn't cause irritation around the mouth due to the drool factor.  They have dimples on the underside and holes for airflow.  Little Man's skin was super-sensitive as a baby so the Mam Air Pacifiers were perfect for him with their open design. 



Avent Bottles

The wide mouths on Avent bottles make it easy to mix up a bottle with one hand without dumping formula all over the counter.  The wide design also make the bottles much easier to clean than standard size bottles.  I like that the nipples have numbers right on them to indicate the flow of the nipple so there's no guesswork.  The measurements on the side are also easy to read. 



Baby Einstein Jumper

We started out with an exersaucer, but were able to use my sister's jumperoo for the last two babies (Little Dude is still using it!).  I liked the jumperoo MUCH better than the exersaucer.  It folds up when not in use, has four different height adjustments, and the hanging toys can easily be switched out for different ones.  My kids seemed to like the motion of the jumperoo better than the exersaucer plus the jumperoo isn't as noisy when a baby is jumping in it. 




Bumbo Seat and Tray

I love how lightweight and supportive the Bumbo seat is.  My kids were able to use this from a few months of age.  When we were going somewhere that I knew didn't have a high chair or place to put the baby, I'd throw this in the car to take along.  The tray is small and lightweight as well so it was easy to bring that too. 



Munchkin Traveling Flash Cards


I got these when Princess was little and have used them with all four of my kids.  Babies love flipping the durable pages and chewing on the handle.  Little Man learned all of his letters, colors, shapes, and numbers from this just by looking at it everyday with me, and Star is on her way to learning them too.  I love that the pages can be written on with a dry-erase marker and then wiped clean.  My kids loved tracing the objects on the pages which helped them learn better.  This set of flash cards is great for when you're out and about, and you can easily use baby links through the handle to make sure it doesn't get lost. 



Baby Einstein Take Along Tunes

This is a super cute toy and all of my kids, my nieces and nephews, and everyone else I've ever seen with it has loved it.  It plays classical music so it's not annoying to have to listen to it for long periods of time.  Of course, my favorite feature is the volume control :)



Swaddle Blankets

My all-time favorite swaddle blankets are the large flannel ones my aunt has made for each of my kids, but muslin blankets come in second.  They're lightweight so baby won't get too warm and have just enough stretch in them to easily get a tight swaddle.  I also used them all last summer to throw over the carseat when we were out in the sunshine.     



Lingerie Bag

Baby socks are tiny.  They can easily get lost in the wash so to keep from having to buy new socks every few weeks or so, throw the dirty socks in a lingerie bag and wash them in that. 



Baby Food Grinder

I keep one of these in the car and one at home because they make it so easy to feed the baby whatever we're eating.  Just grind it up, add some liquids if it's thick and you have homemade baby food in just a few minutes. 



What are some of your must-haves for babies?



Thursday, April 16, 2015

"Grace of God" Dvd Review and Giveaway

Disclosure (in accordance with the FTC's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising"): Many thanks to the Propeller Consulting, LLC for providing this prize for the giveaway.  Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation.  I did receive a sample of the product in exchange for this review and post.  Only one entrant per mailing address, per giveaway.  If you have won the same prize on another blog, you are not eligible to win it again.  Winner is subject to eligibility verification.

 
 
 
About the movie:
Having lost his faith many years ago, Detective Bill Broadly is called to investigate the disappearance of the local church's collection plate. As he questions its various church members, rumors swirl as more congregants learn about the theft. When one unexpected church-goer confesses to stealing the funds, the confession resurrects Broadly's views on God, and helps him see that through faith and belief there really is rebirth and redemption.
99 Minutes // Genre: Family, Inspirational // Rating:  NR 
Stars:
•       John Ratzenberger 
                (“Cheers,” WALL-E, Toy Story)
•       Erin Bethea 
                (Fireproof, Letters to God)
•       Lorenzo Lamas
                (“The Bold and the Beautiful,” “Falcon Crest”)

Right from the start of the movie, I had a character pegged as the suspect.  The movie's description said that the thief was an "unexpected church-goer" so I had a few people I thought it also might be, but when the thief finally came clean, I was surprised.  The movie kept me guessing the whole time and had a storyline that was easy to follow, yet interesting with lots of twists and turns.  I enjoyed this movie and can't wait to watch it again with Hubby.  

I wasn't really sure how the tagline "a story of Easter redemption" fit the movie, but the message was still really good.  The perception of Christianity in the movie was spot on.  I also enjoyed the humor in the story line. 

If you're not the winner of the giveaway, you can still buy your own copy of the dvd at Walmart.     

How would you like your own copy of Grace of God?  Enter to win on the Rafflecopter widget below.

This giveaway is open to residents of the US and Canada.  If you've already won this dvd in a different giveaway, you are not eligible to win it again.  All entries will be verified so play nice!  The winner will be emailed and their name will be displayed on the Rafflecopter widget.
 
 
 

Saturday, April 11, 2015

"The Adventures of Pajama Girl" Review and Giveaway

Disclosure (in accordance with the FTC's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising"): Many thanks to the Propeller Consulting, LLC for providing this prize for the giveaway.  Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation.  I did receive a sample of the product in exchange for this review and post.  Only one entrant per mailing address, per giveaway.  If you have won the same prize on another blog, you are not eligible to win it again.  Winner is subject to eligibility verification.



About the book:
A cute, illustrated story about a girl's imagination and her magical pajamas. In this adventure, Ellie's cupcake pajamas pave the way for she and her Sis to take a journey to a land filled with all kinds of sweet treats. Their journey quickly turns into an adventure to help the Cupcake Queen find the missing sprinkles needed for her coronation ceremony. In searching for the missing sprinkles, Ellie and Sis uncover a life lesson that is important for every child to learn.


My girls were super excited when we received The Adventures of Pajama Girl and the Coronation of the Cupcake Queen in the mail...anything that involves princesses is pretty high on their list.  :)

The book teaches that stealing is wrong and also about forgiveness.  The lessons were taught in a way that was fun and entertaining.  I also love that the lead character, Elli, prayed for a sweet dream before she went to bed and ended up having such a fun one.  Princess is sometimes upset about having bad dreams and this gave her the idea to pray about it every night.  My girls loved the artwork in the book, and Princess enjoyed reading it to her little sister.

I do wish the book was written in prose instead of in poem form since it doesn't flow very well sometimes, but other than that, the book was perfect.


About the author: 
Sandra Hagee Parker lives in San Antonio with her husband, Ryan, and their daughters, Olivia and Elliana - the original pajama girls. A practicing attorney, Sandy is also a part of the music ministry at Cornerstone Church where she and her husband are leaders. When not working or writing, Sandy enjoys traveling with her family and mastering the art of making Pancakes a la Pajama Girl with her two girls.
How would you like your own hardcover copy of The Adventures of Pajama Girl?  Enter to win on the Rafflecopter widget below.

This giveaway is open to residents of the US and Canada.  If you've already won this book in a different giveaway, you are not eligible to win it again.  All entries will be verified so play nice!  The winner will be emailed and their name will be displayed on the Rafflecopter widget.

a Rafflecopter giveaway



Wednesday, April 1, 2015

"Whatever Wanda" Review and Giveaway

Disclosure (in accordance with the FTC's 16 CFR, Part 255: "Guides Concerning the Use of Endorsements and Testimonials in Advertising"): Many thanks to the Propeller Consulting, LLC for providing this prize for the giveaway.  Choice of winners and opinions are 100% my own and NOT influenced by monetary compensation.  I did receive a sample of the product in exchange for this review and post.  Only one entrant per mailing address, per giveaway.  If you have won the same prize on another blog, you are not eligible to win it again.  Winner is subject to eligibility verification.


About the book:
Wanda is in serious need of an attitude adjustment!  She doesn't want to accompany her family to the Rubber Duck Days Festival, and once there, she won't participate in any of the events or join in with her friends.  Soon Wanda receives some helpful advice and learns that "sometimes you have to believe something will be great before it actually is.  Being positive is a choice that makes everything better, not to mention, a whole lot more fun!"


Sometimes, my kids have attitude problems.  And, as dear Hubby pointed out one day, there's a pretty good chance they inherited them from me. 

Ouch.

When I sat down to read Whatever Wanda with the kids, I really appreciated the message.  It was easy for my kids to understand what the book was saying about bad attitudes and how to fix them plus, I got a good reminder of how to work on my own attitude problem. 

Whatever Wanda has a great story line and adorable artwork.  It's definitely a must have for our bookshelf!  I also plan to look for the other books in the Shine Bright series (Can't Wait Willow and Must-Have Marvin) and will be utilizing the many resources available for kids and adults on the Shine Bright Kids website such as posters, coloring sheets, reward charts, and more!



About the author: 
Christy Ziglar, financial planner, mother of twins, and niece of legendary motivator and the world's original optimist, Zig Ziglar, is bringing the same timeless wisdom and ageless advice to an entirely new, younger audience through her Shine Bright Kids picture book series.



How would you like your own copy of Whatever Wanda?  Enter to win on the Rafflecopter widget below.

This giveaway is open to residents of the US and Canada.  If you've already won this book in a different giveaway, you are not eligible to win it again.  All entries will be verified so play nice!  The winner will be emailed and their name will be displayed on the Rafflecopter widget.

a Rafflecopter giveaway

  



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