A post only a grandparent could love

26 May

A friend pointed out that since Jason got home, my blogging has slowed down. Blame it on actually having someone to talk to and go places with. (He’s out of town this week. Here I am.)

So we pulled the tube close to a month ago. About 2 weeks in, the feeding therapist said, “we just have to get her through her first sickness.” The Universe heard her, because she got sick last week.  Both the PT and speech therapist reported having it in the previous week, so I guess it comes with the territory of letting those germ-infested strangers into your home. (Just kidding, I absolutely adore all of her therapists.)

Tuesday she barely ate, she puked three times overnight, then barely ate for the next 3 days. She lost a pound, but I did not panic. She has already gained back 9 ounces, so WOO HOO!

We went to the nutritionist today and she is still very happy with progress. We go to the GI doctor next week and I expect a nice pat on the back. It’s hit or miss as to whether she is meeting her calorie goals, but we are at least getting sort of close, even on the “bad” days. Yesterday she held a Gerber Cheetos-like thing and TOOK A BITE. She fed herself. Independently. The closest we have gotten to that previously is having her hold the spoon while I help guide it to her mouth.

She still doesn’t drink much, but will play with the cup and let me bring it to her mouth about half the time.

Jason and I went to a military formal. I wore makeup! Annika’s case manager babysat for us, and she is perfect and wonderful. We plan to use her again in the future. She and Annika love each other.

We went to a motorcycle race because I am a tolerant and accommodating wife. It was chilly to start out, then the sun snuck out and we all got a little sunburnt, despite me having two sun hats and sunscreen in the bag for Annika. Being prepared will only get you so far.

We went to the geneticist last week and they are running some bloodwork. The soonest results we will get in 6 weeks, and I am hoping they are negative. The other is a blood draw for a big genetic test that costs between $10,0000-$20,0000 and is always denied by insurance. We just have to wait to see if/what the lab is willing to write off or hound our insurance company over. So we don’t even know if it will be run, and even if they do, it takes 6 months to get results. And then only 30% of people get answers. So…a lot of “maybe?!?” The good news is they will call and tell me how much it will cost us before they run the test. They won’t get denied by insurance then bill us $20K. They just won’t do the test.

We are keeping busy with appointments…speech, OT and PT weekly; Nutrition today, GI and Neurology next week, Audiology the week after, and then follow back up with Nutrition…we rarely have a weekday off, unless you count Tuesdays (when I go to work.)

Last Tuesday I was driving home for lunch and my car stalled. On the train tracks. Like in a movie. It just slowly died and would not re-start immediately. This is noteworthy because it had about 1300 miles on it at the time. This is not supposed to happen. The next day I took it back to the dealership (I was able to get it started again after about 45 seconds,) and they have had it since. I get it back tomorrow, but at least they gave me a loaner for the time being. It’s fine, but it’s not an SUV and this week I had to an emergency diaper change on the side of the road. It’s just wilderness between the base and home, and there was nowhere else to stop. I’ll spare you the details but I definitely earned my mom badge that day. I will now look out for anthills before I put a blanket down for a diaper change. And any soldiers in the area should watch their step.

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She is more fascinated by the headlamp while Jason has it on, but she wears it better.

 

 

This is happening…the NG tube is out!

4 May

Annika has been taking less and less via the NG tube. I was using it to supplement to reach our calorie goals when she didn’t eat enough orally. In the end, of course we had “bad” days, but in general it was just a little bit here and there.

I knew we had to do something soon. I feared that if we just kept the tube in, she would stick with the status quo: she wouldn’t eat enough. I would supplement. The cycle would continue. Our speech therapist let me know about a blog that gave some references citing reasons long-term NG tube use was less than ideal and even harmful. I was starting to get anxious that we were doing damage. NG tubes can cause oral aversion (she already had some to begin with. Were we making it worse?) They keep a sphincter open because it can’t close with the tube down it. It causes swallowing difficulty and discomfort. Seeing her overall progress, I was wondering what would happen with it out.

Our feeding therapist suggested we do a 2-day tube-free experiment over this past weekend when she was due for a tube change.

The tube is still out. It will be a week on Friday. After 15 months, this is the longest she has been tube-free!

Our calorie goals are 500+ per day (as set by me. Members of her team have tried to tell me she needed 900 but she was plumping up too fast when we were giving overnight pump feeds, and that was only 700 calories every 24 hours. All kids are different and they can’t use a formula to tell me how much she needs. The GI doctor, nutritionist, and feeding therapist all agree with my reasoning.) Friday and Saturday she only took in about 400 each, but there were days she was only getting that much with the tube in. (I didn’t always supplement after she ate orally.) Sunday I started her back on a cycle of the appetite-stimulant medication, and she ate over 600. Monday and Tuesday she at over 500. Today is going well.

She is not fighting me to eat most of the time. We are still nursing to keep her hydrated, and the next really big goal will be getting her to take a cup consistently enough so that we can eventually wean. My hope is that she will continue eating enough calories per day to gain, and we won’t feel a need to use tube feeding anymore. However, if it comes to that, I think it may be fair to truly consider a G-tube. As much as I have avoided it, I can see the benefits of it over the NG at this point.

So send us positive thoughts, vibes and prayers; cross your fingers; light a candle and sacrifice chickens on our behalf…whatever it takes. I want to be done with tube feeding. I want this to be behind us.

Wish us luck!

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You never realize how bad your complexion is until you take high-resolution photos next to an angel with flawless skin.

 

Go Annika Go!

2 May

I am way behind on blogging.

When we were in Germany, the PT told me about Go Baby Go, an organization that adapts ride-on cars for children with mobility challenges. I figured it was well within Jason’s ability to do it himself, but he lacked the motivation and I didn’t know exactly how to find the parts and plans online. I liked them on Facebook and started following in case they announced a local build day.

They scheduled one for Northern Virginia in January, right near my parents’ house. I planned to drive up and have my Dad help me build one since Jason was still deployed. A huge snowstorm postponed it until the end of March, when Jason was home from deployment and able to participate in (read: commandeer) her car build.

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There were about 10 families receiving cars that day, and Annika was clearly the most able child in attendance. It really put things in perspective for me that despite her struggles, we are incredibly lucky. (I mean obviously we are lucky to have Annika. But you know what I mean.)

Families don’t have to help build, but we wanted to. Anyway we were the first ones done, and Annika actually seems to enjoy it. I say it like that because I was concerned she wouldn’t be interested. But if Annika isn’t interested, she ignores it. She does not ignore the car. I put her in it and she immediately pushes the button, so she knows how it works and clearly likes to move. Now we need to work on steering. For now I just turn the wheel and let her drive in circles in the yard.

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The Notebook

29 Apr

FullSizeRenderI have been logging Annika’s caloric intake since February. I reached the end of the notebook, so I flipped back through to see what else was in it.

The first page is the list of what I needed to bring to the hospital when I had her!

The next few pages are breastfeeding logs from when I was in the hospital. (They keep you there for 3 days in Germany.) There are two pages of baby names. (She wasn’t named until the day after she was born.) The first is a list of various combinations of the names we had on the list on my phone, written in my handwriting. Then the next page is Jason’s writing, where is pulling completely new names out of thin air that we had never discussed, along with more combinations of the “old” ones. Ironically, “Annika Beatrix” is listed twice by accident on the first page, and again on the second page.

Next comes lists of things to do/ask (make first appointment with pediatrician, call passport office, “belly button,” which was presumably what we had to do with it once we went home.) Then there is a list of paperwork needed for her US Passport (9 items.) Then next page is info on transferring Jason’s GI Bill benefits to Annika.

There is a list of questions for the lactation consultant and weights before and after nursing.

Then there is obviously a break in time…because the next page is lists of high calorie foods that I can puree/add ins/etc. that I got from the nutritionist that I met with in Germany when Annika wasn’t gaining weight well.

There are notes written by two different lactation consultants and daily schedules I wrote out (to keep track of her feeds).

Then we get to notes with questions about the NG tube, along with notes, caloric goals, contact info for doctors at the hospital where we got it put in, and steps to doing a tube feed. There is contact info for a new GI doctor, throw up logs, feeding logs, and blood test results.

Finally we get to the more recent calorie logs. I bought a new notebook yesterday because we are hoping to wean from the tube, which means stringent calorie counting to ensure she doesn’t lose too much weight.

It’s interesting to me because it shows the changing goals and focus of meeting Annika’s feeding needs, and I never even realized that I always grabbed this notebook. (I also ripped pages out here and there to make unrelated lists and notes, so I never deemed it a “feeding notebook.”)

I’m going to keep it so she can look back when she’s older. I’m sure she will say, “whatever mom, you were crazy.”

Now I have to go try to feed her again.

 

 

 

Rare Gem

29 Feb

Today is Rare Disease Day.

 

I have a rare gem of my own. One that has taught me more about unconditional love, pride, determination, and the shattering of expectations than I ever could have imagined. And she is only two and a half.

She does things her way, on her timeline.

Maybe she is learning from her Mama. My high school principal once told me that I “march to the beat of my own xylophone.”

Thanks to the magic of the Internet, I now have multiple friends who know what it’s like–none of whom I have met in real life. Some have it “easier;” some have harder battles. But I am so grateful and have so much respect for these parents. My eyes have been opened–I know that I am not alone. I know that things could be so much worse. I know that I am lucky.

Here’s to the ones that stand out from the rest and keep everyone on their toes. Here’s to not knowing what to expect, but being sure that no matter what, it’s going to be amazing. And may all of those searching for answers find them, and find peace. I may not have all of our answers yet, but I have peace. Because I am the luckiest.

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Donate to the National Organization for Rare Disorders

February Update

28 Feb

Jason is home. I never explicitly told you all he was gone, but he left in August. He got back last week.  The pros? After six months, I will possibly leave the house after dark once in awhile. (Seriously, I think I did it fewer than 10 times.) I have someone to talk to aside from Annika’s therapists. Again, I can count the times I hung out with friends while he was gone. I am apparently incredibly antisocial and lazy. He can help out with Annika. My best friend is around to do things with. The cons? I have to cook now. More laundry. More cleaning. Less room in the bed. (We are getting a King, small bedroom be damned.) I don’t get the remote in the evenings. I suddenly have someone with an opinion about how I do things. I’m looking forward to actually doing stuff (outside of appointments for Annika–we already went to see Star Wars. We even took Annika and she did great.) We need to soak up all the fun family time we can, because he leaves again in August. (Womp, womp.)

We have done another major purge of some closets and storage areas in our house, which resulted in four 40-gallon trash bags full of clothing, 2 more garbage bags full of hangers and who know what else, and 3 boxes of books that I took to the trade-in store for credit. Then we went shopping yesterday because my husband has a problem. (Yes I got a couple of things, too. But those trash bags referenced above were 90% his.) The donations are still on our front porch because we are classy and too busy to take them to Goodwill. Tomorrow is the plan.

Thursday I sliced my finger while cutting a bagel because I am a moron. I had to go to the doctor to get superglued. I found blood around my house for a few days. Annika threw up twice, tube included. Oh and there was a tornado watch, and Annika is/was teething or SOMETHING because she was a cranky bear. It was a great day.

I took Annika to the GI doctor Friday for the first time since November. I had previously been nervous that we were going to be pushed to get a G tube. I even purposely delayed it until after Jason got home in case I needed backup. (He couldn’t get off work, so oh well.) As it turns out, we were deemed a “success story,” and the doctor was thrilled with her progress. I didn’t need to bring my notebook with all the calorie counting I have done every day since January 28. I didn’t need to argue why she needs fewer calories than a typical 26-pound, two-and-a-half-year-old child and why I have set her calorie goals as such. (When I explained it to him and the nutritionist, they both agreed with my reasoning.)  I didn’t need to fight for her keeping the NG, and denying the G tube. He said if this is working, particularly if she needs the NG for fluids, then let’s keep doing what works. I am so relieved. While a huge part of this is due to the fact that Annika has decided to start eating more orally, (though not so much this week, because we are cycling off of her appetite-stimulating medication until next week,) I know this is also because I have worked my ass off to get her here. I am going to go ahead and pat myself on the back.

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Annika is thrilled to have her Daddy home. She loves to play with him (and vice versa) and give him kisses. They are pretty in love with each other.

 

 

The Luckiest

8 Feb

It’s easy to focus on the challenges we face. I can’t just give Annika some chicken nuggets and enjoy my own meal. I can’t give her a sippy cup of milk and trust that she will stay hydrated. We don’t often have days free from some sort of therapy or doctor’s appointment. I can’t ask her what’s wrong or what she wants to eat, or have her walk when my hands are full.

However, there are a million ways in which I am the luckiest mom ever. First of all, it’s Annika. She is magic. She is pure joy embodied in a tiny human. Everyone who meets her adores her because she is so sweet and loving.

She rarely cries. I can literally go days without hearing her whine or cry. The only reasons she cries is when she is tired, having gas pains, or, very rarely, frustrated or uncomfortable in a situation. (Examples would be when we put her in the ball pit at OT, or sometimes if we are somewhere too noisy for her mood.)

She is very flexible and adapts well. She doesn’t have a strict sleep or napping schedule. If We need to run errands, go to appointments, or take a trip to London, she is game. She goes with the flow and handles it well. We traveled to multiple countries; I have taken her on International flights by myself. Sure, she had her moments, but overall she was a gem.

So, she can’t walk yet. However, this means I don’t have to chase her around. She also doesn’t climb yet. So I can close her in the living room area and be anywhere else in the house, knowing she is safely corralled and not in danger of hurting herself. (However I can’t leave her on the couch or bed because she doesn’t know how to safely climb off of things yet either.)

She has yet to throw a temper tantrum or demand that I give/buy her something.

She is easily amused. She will play with the same toys for hours/years. She doesn’t seem to get bored. She is happy just observing the world around her, occasionally crawling over to me, pulling up on a different surface, checking out a new toy, glancing at the TV, grabbing for my phone…honestly babysitting her is the easiest gig anyone could get.

She is an expert car traveler. This is saying a lot considering the first 6 months of her life, she screamed bloody murder almost every time we were in the car. I never wanted to leave the house. She has now endured multiple 7+hour road trips to and from my parents’ house (with a few stops, of course) with little to no complaint. She prefers the lights to be on when we are driving after dark.

She smells delicious. Always. Even when she needs a bath.

She is just so damn happy. At the end of the day, if Annika is happy, how can I not be happy?  (Likewise, when Annika is unhappy, it’s really hard for me to keep my spirits up. Having a sick child is the worst.) She doesn’t whine, fuss, complain or protest. She wants to be around me and sit on my lap. She enjoys the simple things in life.

I look at her and feel like the luckiest person alive because I get to be her Mama.

 

 

 

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FeediNG Tube

4 Feb

Apparently February 7-13 is feeding tube awareness week. Ironically, yesterday marks one year that Annika has had an NG (nasogastric) tube.

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It was not a happy day. It was an incredibly lonely, stressful day. I cried a lot. But I cannot help but smile when I see her face.

We got it because she was not gaining weight and refusing to eat enough to help her gain adequately. She was off the charts small, weighing only 17 pounds at 18 months old. While we weren’t thrilled with the idea, it seemed like a fair compromise (between doing nothing and getting a surgical G tube, or one of the tubes that goes directly into the stomach,with a port on the outside.) While the GI doctor in Germany didn’t give us a clear answer as to how long we would need to keep the NG in, we expected about 3-4 months.

It took longer than expected for the supplemental feedings to really make a difference. After 12 months, she has gained 9 pounds. We give Pediasure through the tube, which is pretty high-calorie. However even after she gained enough to get her on the charts, she still wasn’t eating enough orally to justify taking out the tube. At this point, the biggest reason feel the need to keep the tube in is for fluids (and medications.) She still isn’t drinking from a cup or bottle. While she is nursing, it isn’t a lot, and we can’t keep doing this forever.

We go back to the GI doctor at the end of the month. I strategically scheduled it for after Jason would be home, because I didn’t want to have to fight the G-tube battle alone, and potentially tell Jason I lost and for him to feel helpless. There is still a very real possibility that she may have to get one. While I know it’s not the end of the world, it feels a bit like a failure that over the course of a year, I didn’t teach her to drink from a cup. But I need to remind myself that Annika is doing things on her timeline, regardless of what we teach her and when. Yes, we must help her and go to therapies, but doing PT 5 days a week is not going to make her walk sooner than she is ready to. Likewise, shoving a cup in her face against her will is not necessarily going to teach her to drink. That whole “you can lead a horse to water” idea. My little horsey just wants to nurse, thankyouverymuch.

I have very complicated feelings about the NG. Obviously I hate it when we have to replace it. (I change it either every 3 weeks or when she throws it up or pulls it out, whichever comes first. Thankfully lately we have been making it 3 weeks.)  I hate when I have to retape it multiple times a day when she is particularly snotty or slobbery. I hate that it is in the way of her beautiful face. I hate the extra chores it creates, from managing and ordering the right supplies, cleaning them, and remembering to pack them when we leave the house. I hated the cumbersome nature of the overnight pump feeds, especially when it leaked. I hate the tube when it comes out when she throws up sometimes. I still hate it when it sporadically starts popping open and leaking all over.

I appreciate it because we were able to help her gain weight. When she refuses food (which happens less often now,) I can give her some extra calories. When she is sick and doesn’t want to eat, it is helpful to keep her from losing too many precious ounces. I give her multiple medications and supplements daily, and it is so much easier to put it through the tube than to try to wrestle them into her mouth. This is particularly true when she is up in the middle of the night with a fever or cough. Into the tube it goes, and she can just keep on crying and won’t gag it all up and cry harder.

Lately we are using it much less frequently for calories, but again, it is essential for fluids and medications. I’m so excited about her emerging textural competence (I just made up that term)–she had a few bites of GRILLED CHEESE today! But I am still very anxious about what the doctor will say when we see him at the end of the month. Keep your fingers crossed. I am hoping that he will let us keep it for another few months to see if we can make some more progress.

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Progress!

16 Jan

A little update on Annika. I am so proud of the progress she is making. She has been eating well lately, which means she isn’t refusing food multiple times per day. In fact, I haven’t given her Pediasure for two days. And this is when she is on the “off cycle” of the medication that is supposed to increase her appetite. I am thrilled.

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We went to the nutritionist Thursday,who said Annika was at 22% (!!!!) on the weight charts. Granted, she has lost a few ounces since then (we have a scale at home) but I am still not losing sleep. This is amazing, considering she was still off the charts (as in, below 0%) until October. The last few weeks have been really good, where I don’t feel the need to supplement with Pediasure frequently. It’s the combination of her usually eating well (enough) in terms of volume, and also deciding that the world won’t end if she loses a few ounces because she isn’t hungry. It has removed a lot of stress (and work) from my plate.

She has also shown a lot of improvement in textures. Over the holidays, she was eagerly wanting to try everything I was eating. Sometimes this worked out well–cake, scrambled eggs, soft breads, even undercooked french fries. Other times it is a bit more of a challenge, as she can’t handle things like chicken nuggets, cheeseburgers, or steak yet. I try to find something in my meal that she can eat, or something that is so tough that she won’t break through it when she bites down (like pizza crust.)  She lets me bring it to her mouth, she bites down, and feels satisfied that she “got a bite.”

Finally, yesterday I got out the sippy cup(s) again. Up to this point, anytime I brought them anywhere near her mouth, she would turn her head and push them away. Spoiler alert, I don’t have enough hands to hold two toddler arms, a head, and a sippy cup. While she still doesn’t know exactly what to do with the liquid once it’s in her mouth (sometimes it goes down the wrong pipe; other times it just dribbles back out down her chin,) she is actually letting me bring it to her mouth and even opening up for it sometimes. THIS IS HUGE, PEOPLE. I was just telling the nutritionist that while it seems like we are needing the NG tube less for nutrition, we still need it for fluid intake. I give her medications and water through the tube. She is still nursing, but not frequently. The nutritionist told me she should be getting about 36 fluid ounces a day, and I literally laughed in her face, because that is just not happening.  She did say that it includes water in foods, and her purees have a lot of water in them.

So while I can’t pull the NG tube permanently, I am feeling more hopeful that we truly may be able to avoid a G tube. Believe it or not, she has had the NG tube for almost a year. She got it the first week of February 2015. In that time, she has already gained 9 POUNDS. While there are days and moments when I absolutely despise that damn thing (usually when it starts leaking or when I have to put a new one in,) it has been a lifesaver and I’m glad we decided to do it. We return to the GI doctor at the end of February, and he is the gatekeeper of sorts in terms of keeping the NG vs. going forward with a G tube. He has “allowed” us to keep the NG tube longer than most people do, since we all agree it is working well and doesn’t seem to be giving her any problems. While I can see how a G tube might be easier in some ways, I would like to avoid surgery if we can.

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OMG no one knew how the hell to tape her. Look at this mess.

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I am not in this picture because I was crying. It was a very emotional and exhausting week for me up at the hospital without Jason, who was on a work trip. I hated this stupid tube and I didn’t see how we could possibly function with it long-term.

So please keep your fingers crossed for Annika to keep making oral motor progress. The more she eats and drinks, the closer we are to moving forward with that beautiful face, tube-free!

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Carry The Future

12 Jan

I’m sure you have noticed that I am often using baby carriers when I am out and about with Annika. Without our Ergo, I don’t know how we would have been able to do the extensive traveling we did in Europe. (I have since also purchased a Lillebaby, which is mesh and allows her to face forward sometimes.) I would have had more issues running errands or shopping. Even now, I use it when we go on walks or when I have to run errands and she doesn’t want to be in the stroller or cart. It has been instrumental in allowing me to fly alone with Annika on multiple occasions, and obviously helps even when Jason is with us. We don’t have to bring a bulky stroller, but our hands are free. Annika loves being “worn;” she likes being close to us. (She literally sleeps on top of me. It’s adorable until your limbs fall asleep.)

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Jason has used it a few times too!

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Babies (and toddlers) get heavy. Annika is somewhere around 26 pounds right now, and not walking yet. While she finally started enjoying riding in the stroller last Spring, it is not always a practical option.

I heard about Carry The Future a few months ago. A mother in the US started collecting used baby carriers for refugees in Europe. It started in her home, and has grown exponentially thanks to its exposure on multiple media outlets. They can now purchase new carriers as well, and have delivered over 2500 carriers.

I got teary eyed watching this, just imagining what these poor children have been through and the desperation their parents must feel.

Over Christmas, we spent some time in a city, where we probably averaged 2 or more miles per day (when we weren’t hunkered down in the apartment and avoiding the freezing temperatures.) Of course,  I had the baby carrier. The bottom line is that I would be screwed without it. Twenty six pounds gets really heavy after a pretty short time. There were days when I was walking, just up a slight incline, and my back would start to hurt a bit. Maybe I was cold. Maybe I was cold and sweating at the same time, which is my own personal hell, but that’s neither here nor there. But I could not stop thinking about these families.

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Refugees are running from their homes in search of a better life for themselves and their children. Can you imagine walking miles–tens, even hundreds…traveling for 12 or more hours a day for weeks at a time…and carrying a baby or toddler? I can’t. I just can’t. I cannot fathom the exhaustion and determination these people feel. As I carried Annika through the streets, these families were constantly on my mind.

While I read about this organization months ago, and even went on to “like” them on Facebook, I didn’t do anything. But I am now. I am going to donate to this cause, because I want someone else to feel the relief of a baby carrier. I am writing this post in hopes that you will feel compelled to do the same. I encourage you to like them on Facebook. They are also on Twitter and Instagram.  They often post photos and the happiness and gratefulness on the faces of these parents (and sometimes siblings) is heartwarming. I can’t do a lot to help these refugees, but this is something I can do. And I truly think it will make a difference.

To donate, you can go to their website and click on the “Donate” tab. Whether you want to donate a baby carrier you already have, send money for them to purchase a new one, or a relief package including snacks and diapers (diapers! Can you imagine? Just an added stress…) there are many ways to support this organization. I hope you will consider easing the burden for a parent seeking safety for their child.

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