Unstoppable

21 Aug

Annika has been doing so great lately. She started taking independent steps somewhere around her birthday. Last week in PT she took twenty two of them. She is getting better about walking while holding someone’s hand, but she is really mastering walking by herself between furniture.

IMG_3957

We have been working in PT on bending over to pick things up, and today she tried to do it herself (unprovoked.) We have been working on trying to stand up from the floor (she usually pulls up on furniture), and this weekend she attempted that by herself as well. She hasn’t quite mastered either but it is so exciting to see her making progress.

IMG_3971

She has recently started helping me to turn pages when we are reading books. She becomes more vocal whenever she is on FaceTime, especially with her Daddy. She is watching TV more than she used to and she is more interested in other children. She took a toy away from a friend this weekend. She is usually so passive; this was a big deal.

She is eating more volume. She lets me bring the cup to her mouth 85% of the time without a fight. She is testing out more textures and challenges in eating. She ate an entire  mini cupcake yesterday; she took a bite of a dill pickle; she can eat french fries and bananas. I am almost tearing up writing this, I am so proud of her. 

IMG_3856

She eats every single time I put her in the high chair. She then looks for her button with a recorded phrase, “I’m all done.”

IMG_3886

She is magic. She is an absolute delight and I could not love her more. I feel sorry for everyone else in the world because the don’t get to be her Mama. Sucks to be you.

Three

19 Jul

Last week, Annika turned THREE. I can’t believe I have a three year old.

The only plans I had for her were to make her a cake and Jason and I would sing Happy Birthday. I am far from an expert cake baker, but I enjoy baking as a sign of my affection. This year I decided to make her a Star Wars cake, since she loves the Star Wars theme song. (It was either that or choosing cake decorations of whichever character I wanted from the party store, since she doesn’t care about cartoons yet.)

As I was searching for ideas online, I found some impressive cakes that were clearly out of my ability range, but I did think I could pull of a BB-8 cake. (This is a character from the newest Star Wars movie, if you are either my best friend, mother, or live in a cave.)

BB-8,_Star_Wars_The_Force_Awakens

IMG_3515

I made a regular 8 inch round cake, plus a smaller…6 inch? I don’t know. Then I cut off the bottom of the smaller one to make the head & iced them both


IMG_3516

I used a glass to make the circles, then traced over them with orange icing

IMG_3577

IMG_3517

Not perfect, but good enough for me


IMG_3518

I bought black food coloring and accidentally put too much in. This was supposed to be light gray. Again, close enough. Because I was out of the cream cheese frosting at this point. #HalfAssed


IMG_3520

I used one of these fancy guys to fill in some of the gray areas and do some of the stripes


IMG_3521

Most of this is (supposed to be) gray, and I used the black from the earlier picture to make the large round dots on the head.


IMG_3531

I felt like it was missing something, so I used a Star Wars font to make an A. The practice one on the paper towel was much better and I almost cried trying to fix this one. But TA DA!

Now what you really want to see: cute pictures of the birthday girl.

IMG_2697IMG_2699IMG_2703IMG_2706IMG_2713IMG_2715She didn’t love it but didn’t hate it. so I call that a win. Happy birthday to my sweet, perfect Princess. We love you more than we ever thought possible.

Sad State of the Union

10 Jul

I already know this post isn’t going to be a profound and well-organized as it needs to be. But I have to express my sadness and frustration at the state of this country.

There are too many guns. There are too many murders. Presumably no one is safe.

There is a very real problem with (some) police officers and their undeniably unnecessary use of force, resulting in the deaths of innocent black men (and, less frequently, women.) If you are in denial of this fact, then the names Eric Garner, Tamir Rice, Sandra Bland, Philando Castile, Michael Brown, and Alton Sterling should not be stored in my memory without having to look them up. And there are more, so many more. None of these people should be dead.

The two this week are especially frustrating. They were killed because they had guns. They were not shooting, brandishing, or using them in a threatening manner. I keep hearing “more people need guns,” yet in this case these men were killed because they had guns.  Castile even told the police officer he had a gun. And the insult added to all of these “injururies” is that the officers never seem to be held responsible. So these individuals died in vain. How would you feel if your loved one was killed by an officer for unfair reasons, and then no one was held responsible? What if your dad was selling cigarettes, then was choked to death while being restrained, then no one was punished? This enrages me.

I also wrote on my personal Facebook page on July 8 (the morning after Dallas,) “If you are outraged and heartbroken today, but you weren’t yesterday, you should reevaluate your priorities.” The murders of Dallas officers were senseless, awful, and served no purpose. I do not support the murder of innocent people. Just as it is wrong to stereotype and label all blacks, it is wrong to do the same of all police officers. But I have yet to see much condemnation of the “bad cops” by the “good ones.” All I hear is, “you don’t know what it’s like.” No, I don’t, but I know you can’t fucking KILL SOMEONE because you are afraid, when they have given you no reason to use such measures! Tamir Rice was a CHILD PLAYING WITH A TOY. Michael Brown had his arms in the air. I don’t know a ton about the rules of engagement in the military, but I’m pretty sure soldiers don’t go shooting every adult male who *may* have a gun or be a threat.

I also hate the “all lives matter” response to “Black Lives Matter.” If you respond with all lives matter, you are totally missing the point of Black Lives Matter. Black people are shown over and over, through unnecessary police force, through unbalanced prosecution of crimes, and reaching as far back as segregation and slavery, that their lives don’t matter (as much.) And “Blue Lives Matter,” NO FUCKING KIDDING, has anyone ever said they didn’t? (And if you quote the militant vigilantes who are trying to “get even” for black deaths, they don’t count. They are a sliver of the population. You don’t need a hashtag against them. Most Black Lives Matter proponents don’t think police lives don’t matter.) The vast majority, I would guess 99.999% of Americans, believe that blue lives matter. I do NOT for a second believe that the rate is that high that cares when black people are killed in traffic stops.

I have heard two compelling analogies: this one and this: FullSizeRender

And this isn’t even touching on Orlando. Civilians do not need access to high-powered assault rifles. They were created for one purpose- to kill people. So why would a civilian need one? I don’t know m(any) people who use an AR-15 as a home defense weapon. Do you keep it locked and loaded beside your bed? (If so, you could go to jail if there is a child in the house (ever!), because that’s against the law.) No, most people who own guns for home defense use handguns. They are smaller, easier to maneuver, and easier to safely conceal while still being accessible.  To all of those who argue it’s a second amendment right, that was when you had to load a musket after every round. The founding fathers also supported slavery and preventing women from voting or owning land. Some shit is outdated and needs to be revised.

I don’t even know what else to say. I think the most frustrating part is that I don’t know what I can do to make it any better. I can’t take the guns from the crazies. I can’t stop people from selling them. I can’t make people less racist. I can’t convince the angry people that not all cops are bad. I just hope Trump doesn’t win the presidency, because then this country is going to Hell in a hand basket. (I will save this for another day. But the two comments that scare me the most are when he claimed he knows more than the Generals about ISIS, and that he gets his military advice from “watching the shows,” whatever the fuck that means. Lord help us, I wish Mitt Romney were running. YES I JUST SAID THAT. You know it’s bad.)

Dental dilemmas, feeding update and another family 5K

25 Jun

A few weeks ago I was brushing Annika’s teeth when I noticed two little dark spots on a top molar. I was frustrated and angry; I have brushed her teeth every night for about the past year or so. I think part of the problem is that I used a finger brush, which didn’t really always allow me to get into the crevices. I was also so focused on getting plaque and tartar off, that I didn’t likely get the crevices of her molars.

I had planned to wait until she was 3 to take her to the dentist, as I had read that prior to that they just taught to to brush their teeth. I called the next day to get Annika added to our dental insurance and took her later that week. The dentist was highly recommended by our neighbor, whose son has autism. He specializes in pediatrics and particularly in kids with special needs. I was concerned about taking her to the dentist and how she might react given she doesn’t follow simple commands yet.

She hated it, but overall she did great. He painted some stuff on her teeth that “seals in” the decayed areas and doesn’t allow them to continue, and eventually she will need to get further treatment. He also told me to start using fluoride toothpaste (I wasn’t previously.) I now have a new brushing routine that will hopefully prevent further issues. He also told me that nighttime nursing wasn’t really helping the situation…more on that in a bit.

Then I was brushing her teeth the other night and noticed what looked like a lip tie. This was surprising, as we have worked with two lactation consultants (one at birth and one after she was a year old and she was deemed “failure to thrive,” and my supply was dropping.) Neither noted any lip or tongue tie. However, lip or tongue ties can lead to nursing problems, reflux, poor weight gain, frequent feedings, inability to take a bottle or pacifier, and gas, among other symptoms. She’s really been a great nurser, so it doesn’t completely seem to be an issue, but I am still pursing an evaluation to determine whether or not getting laser treatment would help her. We went back to the dentist yesterday to get his opinion, and he made a referral to a feeding and swallowing clinic. I am hesitant to hope or believe that clipping them (turns out she has a mild posterior tongue tie as well) might help her drink from a cup or bottle more successfully, but it might help.  I am also a little anxious about treatment; he thinks very highly of their feeding clinic, but we already have a SLP (speech and language pathologist) and a feeding therapist through OT, so I don’t see our insurance allowing us to bring another provider on board. I don’t want to lose either of our great therapists. I am hoping I don’t feel compelled to start using these new people. Of course it’s already my option, I am just afraid of meeting them and falling in love with them and wanting to pursue or try their program. Annika has made a lot of progress but we still have a ways to go with feeding and drinking.

We went to the nutritionist this past week for a weight check. Jason happened to be able to meet us there since it was on base. She has gained less than an ounce in a month, but she isn’t losing, so the nutritionist was still happy. Overall I think Annika is eating quite well. The nutritionist calculated how many calories Annika “should” be getting based on her weight and I laughed at that number; she is getting less than half of that on a good day. But we know based on the calories she was getting via tube feeding that she gains quite well with fewer calories than the calculated number. (She said she needs 1200 calories. At 700 she was plumping up like the Michelin man. Our goal has been 500-600. Some days it is a struggle to get her to eat even 400.) I have stopped counting calories for the time being, as no one was even checking it and it just stressed me out. I pay attention to what she is eating and know how much she is getting in a given sitting, and try not to put too much stress on the eating process. I don’t want it to be a situation when I am forcing her to eat. I try to respect her when she says she has had enough. We stopped her appetite stimulant on Wednesday (we have to cycle off every 2-3 weeks so the side effect remains) and she is actually eating quite well the past couple of days without it! Not that I won’t go back on it, but I am pleased that she isn’t outright refusing to eat like she has in the past. She has had the tube out for almost 2 months and so far so good!

The nutritionist also told us I should night wean her. Heavy sigh. I know it’s time. But it’s going to be a pretty miserable week or however long it takes. Luckily she put some responsibility on Jason and he is off next week, so we can be miserable together and I don’t have to stress about keeping him awake before his alarm goes off at 4:45 AM. Should be a pretty fun vacation week.

We ran a 5K today on base with our friends. The dads pushed the strollers and the moms tried not to die. Everyone succeeded despite the suffocating humidity.

IMG_3185

I don’t really have appropriate sunglasses for running and I found these in Jason’s car on the way there. I am not making a fashion statement here.

IMG_3184IMG_3166

I am trying to be a runner again

8 Jun

This is either a terrible idea or a great one: I signed up for the Army Ten Miler in October. It is in DC, which is close to my parents, so I don’t have to worry about the expenses of travel or lodging.

I have wanted to run it for a few years, but it always sold out before I even realized it was open, we were in Germany, I wasn’t actively running, etc. I had planned that it would be fun to run with Jason, but then re-evaluated my idea of fun and remembered that he is faster than me and a bit of a drill sergeant when we run together, and 10 miles of that was pretty much the opposite of fun. He will be deployed during the race this year, so it’s actually the perfect opportunity for me to run it. Alone. Slowly.420459250-full-metal-jacket-1987--04

My biggest complaint/concern is that they do not allow runners to use headphones. I have only run one 5K without music. I guess I will have to rely on the excitement and momentum of the crowds to keep me going. If anyone wants to run beside me all John Cusack-like with a boombox or iPhone turned way up, let me know. (I came across a wearable speaker, but I don’t want to subject runners around me to my music choices against their will.)

4e83bad0-c1c9-11e3-b812-f709edc55f29_2048_SayAnything

I figure with him home for a couple more months and then gone for a couple more before the race, I can use him to do long runs (last weekend I did my first 5 mile run in years while he stayed downstair with Annika…yes I train on the treadmill because I am the only weirdo in the world that prefers it.) After he leaves, I can still do longer runs whenever I need to, since I moved the treadmill to Annika’s room so I don’t have to corral her for too long. It was also after doing that 5 mile run that I decided I am capable of training for this race. It has been 4 years since I have run anything longer than a 5K. I AM READY. (Well, I can get ready.)

1229f25b16d70998_brad-pitt.xxxlarge

However, my anxiety (it is extremely mild and 100% based on Annika) got the best of me just as I was hitting submit for the registration. I started worrying that it was the Army Ten Miler and a perfect target for terrorists to plant another bomb. Annika won’t be with me, but I also have a lot of hangups (don’t get me started) on leaving Annika if I die. And how Jason doesn’t know where her GI doctor’s office is since it moved or what her daily dose of medicine is. I’m just going to run in the middle of the road and hope I survive.  If I don’t, tell Jason to check the binder in the kitchen. 

Memorial Day 2016

30 May

Remembering Nick Roush and all those lost in combat.

Here is his story.

13268405_10208568501785493_780283312261792363_o

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.

IMG_2852 2

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!

IMG_2496

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.

IMG_2466

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.

IMG_2775

 

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.

 

 

 

Follow

Get every new post delivered to your Inbox.

Join 299 other followers