Fall Clothes for a Baby

I just got this cute baby girl outfit to review, for my niece Margaret. 

She has Trisomy 18 like her big brother Emerson does. She's still in the hospital. Only my mom, dad, sister and brother-in-law have been able able to see her. That's not counting the numerous doctors and nurses that have helped her. 

She's had a MRI, EEG, and a sleep study done. She's for the most part doing well. We've known that she needed jaw surgery, but after the sleep study that doctor wants to make that happen ASAP. Lots going on, for them. It's a good thing my parents are retired, and can help out.  

When I get the opportunity to review clothes for Margaret, I jump on it! They've only had boys this far, so why not get neutral or girl clothes? All baby clothes are so cute. 

Recently I got a fall outfit to review. You can get it here: http://www.amazon.com/gp/product/B08G134KKM, for $10.98-$11.98.

Colors:

• Mustard Yellow
• Pink
• White

I thought with fall, the mustard color would be great. Plus we've been having this discussion - do baby girls have to wear pink? Some family members say, "Yes", while other family members say that color has no gender. I don't think pink always needs to be on girls. I watched an old video once that said pink used to be a boy color, and blue was for girls. Before that all babies wore white gowns to make it easier to change diapers, and bleach out stains. What do you think? Is pink a girl color, and blue a boy color? 

It Has a Hat, or Hair Tie

That's yet another thing we disagree on. Travis thinks big bows, flowers, and ties on babies look so dumb. I don't mind them. I just can't tie them all pretty like.  

Sizes, for This Outfit:

• 0-3 Month
• 3-6 Month
• 6-12 Month
• 12-18 Month

I love that it doesn’t have built in feet. Often times babies have smaller or longer legs that just don’t fit right in them. I like the snaps, that make diaper changing easier. 

Are you ready for fall?

Disclaimer: I got this product, for a discounted price in exchange for an honest review. All opinions are my own. 

Random Tid bits

1. This week my sister had her baby girl. What I thought would be a really positive experience has flipped into being difficult. Margaret (my niece) was breech. They got her flipped, so my sister was induced. The umbilical cord was wrapped around her legs and arms. Off to an emergency C-Section she went. My sister lost a lot of blood.  
   
   They took Margaret, and put her in the NICU. She was having mini seizures, so she got put on a cooling mat. I thought in the photos she looked more like her brother Emerson that has Trisomy 18, than her other brothers. 
   
   
2. When my sister was pregnant she got a blood test. All results showed that Margaret is normal. We now know she does have Trisomy 18 like Emerson does. 
   
   
3. I've been feeling excited with a new baby about to happen, sad that she had to be taken via c-section, angry that her brothers that have no chromosome problems will have even more attention taken from them, and not knowing how to feel. I love my nephew Emerson,  but he's a lot of of work. He has had tons of medical issues. He’ll never know what it’s like to live without pain. 
   
   
   
   
   
4. If someone taught a Psychology course...my family that has at least 3 carriers of Trisomy 18 would be a great topic. Should someone that wants to have kids, have them if they carry this to pass on? So much could be brought up: God, Life, Quality of Life, Medical Needs, Late Term Abortion, and so on. Late term abortion would have never been an option, for my sister, but it’s a topic that would be brought up. It's hard to know how to feel and talk about. We put other animals down that are in pain, but we don't with humans. I'm not saying we should. I just don't know how I feel about it all. 
   
   
5. To make this random, online learning is going to work...I think. We've had our bumps. I took Isaak in twice, for tech support. I thought it was his account. Turns out he was using Teams in the browser, and not the downloaded app. Errors occur with that. He's good now. What's really wonderful is that he got a new ipad on Friday. It will work so much better than the old PC they gave him. Isaak likes that he can hear the teacher! No random kids talking. Homework is all put in one place.
   
   The district has made adjustments along the way. Kindergarten, first and second graders now have 1/2 days, with bigger breaks. I think that's a smart move.
   
   What do you think about online learning? Is it working where you live?

Send Positive Vibes

My nephew Emerson has been having seizures. While it's fairly common for children with Trisomy 13 and 18 to have them the medicine he was on didn't seem to help them. He was on the highest dose. If the switched his brand of med then a side effect happens - it would lower his bone density. His bones are already not very strong. I don't think medical marijuana is legal yet in Nebraska.

They haven't figured out what to do.

This weekend he has 20 or so seizures. :(

I watched a few. He basically pauses for a bit. Then gets really happy when it's over. I would think a seizure would make someone completely wore out. I was so clueless about seizures I had to go look up information on them.

On Monday he got a EEG. It was so bad they admitted him into the hospital right away.

Evan, his oldest brother is in 7th grade, but they still don't like the idea of their kids being left home alone after dark. My oldest sister Angie went over there last night, and I'm going over tonight. My parents helped get their youngest Edison to and from preschool.

I do hope they come up with a plan for Emerson. It sucks having him in the hospital. He can pick up other illnesses there, he misses his brothers, and the rest of the family pitches in a lot.

Emerson and Edison on a Go-cart at the Pumpkin Patch:

We have a car in the shop from the hail damage. We only have a rental car for 3 days. That car they may total out. You know that saying, "When it rains, it pours."? I'm beginning to think it's never going to stop pouring.

Is it "pouring" where you live?

All Better

My nephew Emerson didn't get out of the hospital until Friday. He had an infection where his feeding tube was put in after Christmas. Later we learned that part of it fell off inside him. The worst part of the whole situation was that the surgeon didn't want to see him when my sister called him initially. The doctor said, "He'll be fine." Shaking my head - what?

When my sister messaged me at work about this I messaged back telling her that it had to be an infection, and to call our Pediatrician Doctor Harrison (my kids go there as well). Doctor Harrison saw Emerson within an hour, he called the Surgeon's office, "Yes! You are seeing him! He has an infection!" By that time it had spread, was really red, the redness was hot, he had a temp, a high white blood cell count, and Emerson was not a happy camper. The Surgeon proceeded to tell the Pediatrician that he didn't need to be seen. Anyhow Doctor Harrison won that fight. The Surgeon got some not so nice comments from my sister at the hospital.

Emerson had antibiotics, slept a lot, his infected area drained a lot. Once he could have surgery to take his feeding port out to put in a new one they did. He is doing better, but still tires out easily.

The hospital's therapy dog came by right as Emerson was about to leave.

I guess it sounded like Emerson said, "All Done!" when they got in the car. He does say a few words, but not consistently.

By the time they started to ride up their hill he was clapping.

Emerson was smiling a lot because Edison and he kept hugging.

Have you ever had a hospital stay? What did you have to go in for? I think my boys have had more medical care than I ever have when they were babies.

Surgery Was a Success

My nephew Emerson that has Trisomy 18 has been battling breathing problems, since the fall. He's been in and out of the hospital 3 times I think - I kind of lost track. My sister kept telling the hospital that she thought possibly some of the problems were from a hernia that he's had, since birth.

The doctors kept pushing that thought away. They noticed he was having quite a few seizures happening. Instead of looking more into his hernia, they focused on his seizures.

At that point he was in pain, upset, doing this strange breathing thing, tired and not himself. Only 1/2 of those symptoms were from his new seizure meds.

Prior to this fall he was a happy little guy!

After this last MRI they found out that his hernia was pushing his colon up and down. It was moving its way up into his chest cavity.

Yesterday he was prepped for surgery:

Little Emerson keeps loosing teeth. That front one is loose right now. His glasses are tinted to help with his seizures. I stole this photo from my sister.

He had a hearing test, while he was out. His hearing keeps getting progressively worse. They are looking into Trisomy 18 kids to see if hearing loss is common. 

His seizures are the same. He's always had some. Hopefully they don't get worse.

His surgery on his hernia was a success. I hope he starts being more his smily self. 

Dance Recital

Last night I went to my first dance recital. It's a fact that I've never been to one in my life.

I have 2 sisters, and none of us were in dance. Most of us had boys, with the exception of one niece and they weren't in dance. I thought at one point in time that I'd put Mica in dance, but never did. I think we chose jujitsu instead. Time wise and financially kids just can't do it all.

When things come up for special needs kids, my sister signs my nephew Emerson up. Some things have been great for him, while others were flops. 

Water Therapy for example was horrible on many days. Later my sister found out from a speaker at a Trisomy Convention that warm water in particular is horrible for kids with Trisomy 18. The speaker has partial Trisomy 18, and he felt like warm water was shocking him. Emerson now had cold baths, and does alright with that.

Fusion Dance Studio that took in kids with special needs to have some dance classes. Volunteers helped the kids. So many of them love to dance! 

I was undecided if I'd be able to go. The studio was pretty far from my house, I have a mountain of things to do, and Isaak had a birthday party he was at that got over when Emerson's recital started.

My sister couldn't decide if Emerson was well enough to dance. Then my aunt mentioned that if he wasn't well enough he could just go in his wheelchair. He didn't end up going in his chair.

Time rolled around, and I was done with one of my main tasks. I hurried over to see my nephew dance.

He didn't look like his happy little self. He was more the stare off into space Emerson. I know he hasn't been sleeping well, he's having seizures, so he's on a new medicine for that, he's still cutting his molars, and there may be more wrong with him that we're unaware of at this point.

When the music started Emerson did seem to want to dance though. He loves to bob up and down. The other kids really got into their routine, so it was fun to watch.

I kind of forgot that Emerson didn't have his hearing aid on. He probably couldn't hear the music, nor could he hear anyone say, "Emerson smile!" or "Emerson look." If his hearing aid falls off it makes a dial up internet sound.

He looked super sharp in his sequin vest!

Here's a photo with my sister and him afterwards:

You can tell that she was super proud to be his mom. I was a pretty proud aunt.

Do you have anyone in your family that likes to dance? 

SOFT

My sister's family goes to a convention every year for the nonprofit organization called SOFT.

If you are new to this blog meet my nephew Emerson. 

SOFT is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and decisions surrounding the diagnosis and care in Trisomy 18, 13 and other related chromosomal disorders. 

Every year my sister's family meets new friends that offer support. She's also been able to meet with doctors that specialize in dealing with kids that have Trisomy 18, 13 and other related chromosomal disorders. Last year Emerson was able to meet with a doctor that knew so much in regards to his care. So much more than any doctor here in Nebraska. We are lucky that we have doctors that are supportive. Not every doctor around the country is positive. 

Emerson is always smiling. He strives to do things that no one thought he'd be able to do. 

In hospitals around the country babies that are born with Trisomy 18 and 13 are said to be, Incompatible With Life. More and more kids with an extra chromosome are living, smiling, and redefining Incompatible With Life. How can you call kids that are living Incompatible With Life?

To help you understand what Trisomy 18 and 13 are, that extra chromosome causes severe developmental delays. Down Syndrome - the most common know chromosome disorder is Trisomy 21.  

This year my sister's family is packing up to go to Utah. 

They need help to get there though. I donated $25. If you'd like to, or can donate click here. I understand if it's not possible to donate. Not everyone has the funds to do so. The smallest amount to donate is $25, but they have an OTHER button, where you can type in $5 + another $5 adds up. 

Emerson's #Case Study

A case study went up for my Nephew Emerson. You can read his study here, and look at other studies with kids that have Trisomy 18 here.

It's important that more people learn about Trisomy 18. Emerson actually has partial Trisomy 18.

His medical story is now in this case study.

My sister said to share it. Please read and learn about Emerson!

Just a little extra:

I've been searching for a YouTube version of Cuerdas. It's Spanish for Strings. All I could find was a facebook embedded video. Now I found a YouTube one, so I can share. Yes it's in Spanish, but you can figure out what it means without knowing any Spanish. I just love the message of the short!

Thank You For Your Votes

Little Emerson didn't win the special bike.

I just wanted to thank all those that did vote, and shared! Rosey at Mail4Rosey shared so much!

Just so you know every kid that was up for that raffle was deserving of the special bike!

This little guy won:

Source

He to has many development delays.

I'm happy for their family! What a great opportunity for families to win something so great!

Please Vote to Help Emerson #Win a Special Bike

I don't normally ask people to vote for things, but...

My nephew Emerson has a chance to win a special needs bike. He loved using the one that he used in physical therapy. All the equipment for kids that have special needs are super expensive!

Please go here to vote for my little nephew Emerson.

If he wins, he'll get to enjoy one of these:

Thank you!

Test Results Finally

Finally my sister (Aunt Terra) got Emerson's Brain MRI results.

Mica holding Big Buddha Belly Emerson.

He does have something there. I guess before the doctors just thought it was from infancy. Now it is questionable if whatever it is has grown, or not. They are still in the dark about what's to come. It could be atrophy (shrinking) of the brain. Every day of Emerson's life is just always taken day by day.

We do know he'll have to have eye surgery.

He got his ears cleaned out today and his tubes had fallen out, and there were holes in his ear drums. :( The holes are pretty big. They may need a graft patch repair. Often times with the size of holes he has there is hearing loss. His hearing was checked, and so far he seems to be fine.

Emerson Standing Like it's No Big Deal

I haven't shown my nephew Emerson in awhile. Many older readers know about Emerson. I do have some newer readers that do not.

He was born with Trisomy 18 AKA Edward's Syndrome. In the hospital babies born with this, and Trisomy 13 are called, "Incompatible With Life". It is because many are born with a hole in their heart, in their brain, or have other severe issues.

Emerson hasn't had it easy, but he hasn't had it as rough as many others with his genetic condition.

I could get into all the stuff he has had done, he's doing pretty good, so I'm not going to. He will have to get an MRI on the 10th for an eye surgery coming up.  It's to double check if there is fluid on the brain, but he has no other symptoms to go along with that. It helps that we have many nurses in our family that know what's what.

Emerson has been practicing being in the crawl position, sitting and in the stand position. One fun thing I got to watch is him playing with a car. Isaak pushed the car towards him, and Emerson pushed it back. He thinks his brothers are funny to.

The only thing he's missing in these photos are his glasses. They do help him see better, but they fall down a lot.

He stood for a few minutes. Then he got excited, and started to tilt off to one side.

Emerson the Super Hero

I got this onesie for Cousin Emerson last year for his birthday. It still fits, sort of, gut and all. He just got done with his last chemo treatment last week. He'll get a scan soon to see it his tumors are gone. We're pretty sure that they are. His last scan showed that they were over 60% gone.

It's Trisomy Awareness month. Trisomy just means an extra of a chromosome. The most popular day that is celebrated in the month is on the 21st of this month. That's celebrating for Down Sydrome. Little Emerson will celebrate tomorrow. He has Trisomy 18, Edwards Syndrome.

Emerson doesn't sit up all the time alone. Here he is though:

Donation

I have to be honest I haven't donated to places all that often. Sure I have, but it's not a regular thing that I do.

I donated to Trisomy Tea. Trisomy covers a lot of things. I have a nephew that has Trisomy 18. Down Syndrome is Trisomy 21. There are others as well. It's just extra of that particular chromosome.

By donating to Trisomy Tea part of the money goes towards Now I Lay Me Down to Sleep and Hope for Trisomy. They sent me these cute paper mugs in the mail with tea for donating:

Now I Lay Me Down to Sleep is an organization that has volunteer photographers that help take pictures of babies in the hospital that may not make it. It helps with the grieving process. Hope for Trisomy helps with research, education and awareness for Trisomy 13 and 18.

I wanted to show you an amazing photo called Tim's Place.  It's a must watch!

The Little Punk Pooped On Me!

Last weekend I thought to myself, "I want to go see my lil' sister and nephews." I feel like I haven't been able to see them most of the winter because of my sickness or that sickness in our family. Now we are all well. Everything is good except for Isaak's emergency room visit last week. That's not contagious. I called them on Sunday and said, "Can we come over sometime today?" They said, "Yes." At 12 we were off to their house.

The boys played with their cousins. Terra and I hashed out what we were going to do for Isaak and Evan's joint family party. We decided that we're going with the ever popular mustache theme. My Brother In Law works at Oriental Trading Company, so he gets a deal and can pick it up, so we won't have to pay shipping. For the first time in my birthday party history (with my kids anyway) we're making cupcakes instead of cake. I couldn't resist these mustache toppers.

Source

Almost the whole time I was there little Mr. Punk Emerson was sleeping. He hardly sleeps. That's a major problem at their house. I show up, and all he wants to do is sleep.

If you like his shirt, I won it at Snugfits when Isaak was little. They have the best shirts! I have to pump it up, I'm friends with the owner. Truly they wash up so nice though. They say some funny things to!

Finally Emerson woke up. I was holding him and he smelled. I didn't know he pooped. I just smelled a funky smell. I know they bathe him less because A) His skin is sensitive. B) He is going through chemo and under his shirt is all kinds of stuff they have to protect. C) He hates baths. I don't blame him. They literally have to put Saran Wrap on him to give him a bath.

The funk smell was poop. It smells funky because of the meds he's on. Up his diaper it went. I went to hand him off and my coat sleeve dragged into it.

I washed myself off. We had to drive home with the funk still lingering for 15 to 20 minutes.

Then my sister got threw up on and pooped on after I left. I think she took two showers that day.

Emerson is only on light chemo. Imagine what it would be like if he was on the nasty stuff!

My Nephew Got Clark Kent Glasses

The boy's Cousin Emerson got Clark Kent Glasses.

Mica said, "Now all he needs is a cape Mom!"

Emerson can now see. I guess he's been looking all over today. :)

I loved seeing little Emerson in this sweater! It used to be Isaak's. See:

Cousin Emerson Turned 1 Year Old Today!

He loved his cake and ice cream!

I think Aunt Terra and everyone else liked the Super Hero romper I got for him. A few of Emerson's doctors showed up to his party. His Occupational Therapist gave him a walker toy. The walkers that they pretty much banned from most stores, Grandma Spiehs found Emerson one online. I understand why they were banned. Too many babies falling down steps. Emerson needs one to help strengthen the muscles in his legs. Aunt Terra only has one set of steps; there's a door to that set.

Super Emerson and Terra

Super Emerson and Grandma Spiehs

It's hard to catch Emerson looking up.

If you'd like to help out with Trisomy 18, the genetic condition Emerson has, the organization Soft is the place to go! The odds were against Emerson. Only 10% of babies with Trisomy 18 go on to live past their 1 year mark.

Mica reading to Emerson and Great Aunt Becky

Isaak holding one of the newest members in our family Corrigan. She is my cousin's baby. One of my other cousin's just had a baby to. Her name is Brooklyn. I only have 6 cousins, so we see each other for most main events.

What to Get?

Cousin Emerson turns a year old towards the end of June. I'm trying to decide what to get him?!? We share almost the same birthday. Aunt Terra's due date was on my birthday. He's beat his odds. His little life has in no means been easy on everyone. He is however a very sweet, cuddly boy! The odds say that with Trisomy 18, only 10% of babies make it past the 1 year mark. He's almost there!

I know my sister is asking for her family and friends to bring money to donate to the SOFT organization. That is an organization to help support Trisomy 18. I'll do that. I want to get the little man something as well.

We have a lot of boy stuff. But I want something unique to Emerson.

I thought since his brothers and my sons are so into superheros one option is this Super Baby Romper with his name on it. Emerson is his brother's super hero.

Another option is to get him something to help him with his physical therapy. I'm still searching! I'd like something that lights up, that he can hold onto. He loves stimulating toys like that. It's not easy finding toys for special needs babies! I did find these blocks from Haba. They have bells and different things inside each block. He's not there yet, but maybe will be in time.

I know it's very unlikely, but if you know of any sites that are geared towards special needs kids, please let me know. If not now, sometime in the future I'll be looking for more toys for little Emerson.

Surgery Again

Cousin Emerson (nephew to me) has surgery tomorrow. He's getting the hardware taken out from his jaw surgery he had a few months ago. That will take a few hours. Then he's getting his adenoids taken out. Thankfully this time he will not have to go on a ventilator. He will be sedated for a few hours.

I'm hoping that when his adenoids come out that he will not get sick as often. I wonder if some of his stuffy nose issues are part teething? It's possible. Babies with Trisomy 18 tend to get sick more often then babies with no chromosome problems. The doctor that is taking his adenoids out really wants that done. His are enlarged.

Here's a picture Aunt Terra (sister to me) took of Emerson:

Little guy loves to eat. It does take awhile. He goes through one 1 little jar every 2 days. He opens his mouth like he wants food. He likes veggies and cereal best. Fruit is not on his list of loves. Terra thinks it's because he has acid reflex.

He loves getting back rubs and head rubs. I was rubbing his head last night and he looks like he was enjoying it. He even shot me a few smiles. Then when I stopped he glared at me.

Terra also gave him a hair cut.

He smiles and will stand up with help.

We'll be taking care of cousin Elijah (nephew to me) during Emerson's surgery. Cousin Evan has a play date and a sports event.

Hang in there little Emerson!

Great and Not so Great

Great

Cousin Emerson got home on Saturday. He was in the hospital since February 2. He had jaw surgery and a herniated diaphragm fixed. He went home without O2, free of the ventilator and no NG tube. He was happy to see his brothers once again. Now he's a silent sleeper, which makes Aunt Terra nervous. Nervous because she can't hear him breathing. She'll get used to it. I'm glad that he can breathe clear.

On the 28th, I signed my boys and their cousins Evan and Elijah up for a Super Hero Party at the Y. They are going to spend the night that night. I thought that would be fun.

Not so Great

Great Grandma Kent that has Alzheimer's disease is getting worse. She now forgets to eat. It's sad to see/hear about someone going downhill that once was on top of it all. She used to make us home cooked meals, she had cookies in the cookie jar, played card games with us and took us garage sale shopping.

Grandpa Spiehs is having Atrial Fibrillation/Pulmonary Vein Ablation Procedure. It's a 3 to 4 hour procedure. He's had fibrillation issues for a long time. The meds he's taking are not working as they should and the side effects are horrible. I'm hoping this surgery helps him!