Let's talk dirty .... dirty clothes that is!

Good morning y'all!

As with many military families, we move from one rental to another, and each rental brings its own challenges. Will your furniture fit? What to do when you don't have built in closets? Those challenges then become an opportunity to get creative, and do we get creative sometimes! We're currently in a split level duplex, and with split level I mean almost EVERY ROOM is on its own level. There are winding stairs in the center of the house that go over 7 levels, SEVEN! This house has become my daily workout. If you're a mom, you can probably imagine how many times I run up and down these stairs!

We're blessed with great size rooms. One is our basement/laundry room that came complete with a half bath and floor heating, so we turned it into a play room/laundry room. But that too came with some design challenges. As you might guess, a family of 5 produces quite the amount of laundry. Creating defined spaces for laundry and the play area without it looking cluttered was interesting. We had a good setup but dirty clothes kept piling up, especially towards the end of the week and well, it drove me crazy. If I had unlimited funds, I'd organize all the things in one day. But I don't, or lets just say someone won't give me unlimited funds, haha. It basically goes back to us being in a rental. We don't know if whatever solution I come up with works in the next home, so anything I do has to be budget friendly. All while looking decent.

This type of laundry basket storage is what I had in mind:

source: http://thebullock5.blogspot.de/2012/01/my-diy-wooden-drawer-organizer.html

I've pinned the plans from Ana White, whose plans I also used for our farmhouse table. However, my schedule has been too crazy, and my list of projects is too long to make this come to life any time soon. But the current situation was driving me batty, so a quick, easy and budget friendly solution had to be found ASAP! Walking through OBI, a German version of Home Depot, looking for new shower heads, I came across these utility shelves for Euro 7.99. I grabbed a laundry basket from the next aisle to check the fit, and my cheap laundry makeover was born. I grabbed 3 of them and had the staff cut a piece of white particle wood in two to cover the top and create a folding area. I already had screws and connectors so all the material cost me less than Euro 38! I already had laundry baskets, if you need some, IKEA has these for Euro 2.49.

I set the shelves up in a L-shape, kind of framing the laundry area and separating it from the play area. They're now sitting against 3 Billy bookcases.

With the new setup came a new sorting system. My husband has been taking over laundry duty, which is very sweet, but you could tell he was a little overwhelmed. When we were in Minot, I had a laundry day. After each load was dry, I folded each person's clothes and put them in their own laundry basket. That's the system he was using too. My schedule no longer allows for one entire laundry day and we've since added to the family so there's more laundry. Our laundry sorter with 3 mesh bags was no longer cutting it. So there were piles of clothes in front of it, baskets with folded clothes, baskets with dry but unfolded clothes. It was a mess. And it drove me nuts. Did I mention already that it drove me insane?

Enter new system! I've labeled each section according to which clothes go in which basket. Whites, lights, brights, dark, linens and delicates. Depending on how you sort, you may want to make changes. The kids were playing with the 6th laundry basket, hence one missing in the picture. Every day, we grab the laundry from the hampers and sort it in the according baskets. Once one is full, it's time to wash. No more 8 loads at once. No more piles. No more mom going crazy!

Here's the laundry area from a different angle. I now have way more space! And a bigger folding area too. I probably should've taken a before picture.... The 31 gifts tote is for dirty shoes etc. As you can see, I also have room for a big drying rack. I like to hang things to dry as much as I can to save electricity and be environmentally friendly. But sometimes you have clothes that can't be dried, think LuLaRoe for example. You know who you are! ;) That's also where my ironing board is stored. There are outlets right by the shelves so I can iron right there in the laundry area. Before they were covered so we had to set up the ironing board by the door, always being in the way.

Before, the top of the washer/dryer/freezer was the only space to fold. Not enough for a family of 5! The tub is for clothes that need to be pre-treated and soaked. That small trash can next to it is for dryer lint and any trash I may find in pockets. I'm going to add a lazy Susan to hold the laundry detergent and a jar for change I may find in pockets, or that dreaded pen that hides in my husband's uniform!

We also had 2 round laundry baskets. One my husband bought before our household goods came here and one was gifted to us when we had Baby A. So I use them to collect the laundry and for the folded clothes, since it's usually just one load. So that's it. Nothing magical. Nothing super cute and shabby chic that makes you go Ooooo and Aaaaaa about it. For now. For now it's just going to be functional without looking hideous. So far it's worked well. I have one load every other day, sometimes two. Totally doable and it never looks a mess!

Thanks for reading! Now launder on!

Here's to amazing!

Hey y'all!

Well, happy (incredibly belated) new year! November through January are crazy busy at our house with birthdays, Thanksgiving, Christmas, more birthdays so I tend to get a late start in wishing everyone a happy new year. The last two months have been particularly busy for other reasons too. We actively started house hunting, after spending a year checking websites etc. we recently started talking to the bank, looking at houses and going hallway crazy in the process - who doesn't? IJ also started ABA (Applied Behavior Analysis) therapy twice a week, which meant changing school days as well as his other therapy appointments. It took me until last month to somehow get the hang of our new schedule. Let me give you a glimpse:

And that's not including any extra appointments for the kids or myself! In between all this craziness I have to walk the dog, do grocery shopping (preferably when IJ is at ABA so it's just AJ and I) and clean. Let's face it, as soon as all the kids are home I won't get much cleaning done, haha. Oh, and I also accidentally started a business. No, really. We've been using Shaklee for a good 3 years here and there in our home. In the pursuit of getting healthier I switched to the supplements and when I started using more of the products I decided signing up as distributor would make sense. You know, for the discount. Problem is, the products are awesome so people wanna buy. And so it happened, accidentally. Now I also spend a couple of hours a week doing Shaklee. Mainly when the kids are in school or when Mister Q is home. This year will be yet another year full of changes, some big, some small. Whatever the changes may be, we'll make 2016 amazing!

Love,
Mimi

Holidays with children with special needs

 

It's holiday season. Some of us get excited to receive invitations to potlucks, dinners and holiday parties. Some cannot wait for that multiple hour drive or plane ride to visit 10 plus family members in record time before heading back home right before school starts again. If you however, crinch when receiving an invitation, hesitating to RSVP out of fear you might have to cancel right before the event. If you are breaking out in a nervous sweat just thinking about driving 10 plus hours, let alone fly, to hop from relative to relative, chances are you're the parent of child with special needs. More so, if your child has sensory issues or anxiety due to their diagnosis. If you're thoughts are not "ah, it's holiday season, what a blissful time", but rather "aaaaaahhhhhhh, it's holiday season! What a stressful time!", this is for you.

 

While working for the Early Intervention Program in Minot, ND (FYI, it's NOT like portrayed in Blood & Oil) I published a newsletter. In one issue I addressed braving the holidays with children with special needs. So here are few tips that might come on handy, especially if you're new on this special needs journey.

Malls and such
Malls and stores can be a nightmare for children with special needs. The lights, the music, the crowds, it's just too much of everything. What might start out as a mesmerized child admiring the big Christmas tree at the mall, can quickly end in a huge meltdown. In a matter of seconds. If I have to get things I try to leave IJ home. However, going to the mall is kind of a treat for him so I'd take him early in the day, before it gets hectic. That way he can look at the decorations, we have lunch, and go home without it overwhelming him. Some malls offer a sensory friendly Santa in a special room without all the noise and crowds. No waiting in lines either, as you get your own time slot. Ask your mall manager about it.

 

It's OK to decline

You'll probably get more than one invitation. It's impossible to go to all of them. In my 20s I might have been able to hop from one event to another, but not anymore. It helps to evaluate which events might overwhelm your child and which might be fun. For instance, we know that large events, or events with a strict and formal schedule overwhelm our son. Unless, there is a safe zone he can retreat to, those are automatically out of the question.

 

Involve your kids

For those with older children, ask them which events they want to attend. Ask them what other things they might want to do during the holidays. Open communication is crucial and involving them gives the feeling that their opinion matters and that they're important. Even if you just let them choose which craft to do, or let them draw postcards. Involving them makes for wonderful memories they'll always cherish.

 

It's OK to cancel

I know proper etiquette may disagree here but don't let that keep you from canceling if you have to. I used to decline almost every event, out of fear people might get upset if I cancel last minute because IJ just had an epic meltdown. Not anymore. If it's a work event or an event hosted by someone who doesn't know us well, I'll tell them we're a tentative. Close friends however, usually understand if we end up canceling. It's crucial though to communicate with the host. Even if I cannot tell them before the beginning of the event, I make sure that as soon as the meltdown or seizure is over (and my child is OK), I call them to let them know. So far there was only one person who stopped inviting us because we had to decline or cancel, and I can live with that.

 

Come prepared

We don't leave the house without IJ's bag. It contains his emergency meds and anything that helps him when he's starting to get overwhelmed or overstimulated. He's not old enough yet to identify when he's getting to that point so we have to keep a close eye on him. We usually ask if there's a room or quiet area we can retreat to when it's getting too much for him. For those situations bring what helps your child, weighted blanket, favorite stuffed animal or toy, a tablet, headphones. Snacks, if your child has texture issues that keep them from eating certain foods. Whatever it may be, bring it with you. Sometimes, all they need is a short break and they're OK to continue.

 

It's OK to leave early

So you've carefully selected an event you thought your child could handle, you came prepared, you helped them regulate but it's no use. Not even the break helped. Your child won't enjoy suffering through stimulation overload, you won't enjoy the event, trying to keep your child's meltdowns at bay and the guests and hosts won't either. The best thing is to leave. Say your goodbyes to the host and thank them for inviting you and for understanding. We left church events, work events and other events early because of meltdowns. We even had to leave our family's Christmas dinner last year and we made it clear we had to leave immediately. We're open about IJ's disability and I believe it's part of the reason people have been understanding.

 

Plan for down time

The holidays can be a stressful time, for both kids and parents. TAKE A BREAK! A day in your pjs, snuggled up on the couch with a movie and your favorite snacks, relax. My kids enjoy taking the dog for a walk, even in the snow. Only because we now don't live in North Dakota anymore ;) Afterwards, we watch a movie or play a game and warm up with hot chocolate and chai. Often those are my favorite days. If possible, I recommend for parents to have some down time too. Even if it's just taking a hot bath.

 

Consider being the host

Sometimes it's a good idea to host the family gathering yourself. That way your child is in a familiar setting with a safe zone to escape to whenever necessary. You can choose a time that you know works well for your child and if you do a potluck you don't have to worry about cooking and baking all day. Family and friends tend to not care that your house may not look like a magazine spread and in all honesty, I often just make sure the "public" rooms are good to go and store anything else out of sight. I'll get to it afterwards. It's not going anywhere. I promise.

 

Are you going to please everyone by doing this? No. Will there be people whose feelings get hurt? Maybe. But the important thing is, you're doing what is best for your child and your family. I learned to stop worrying about making everyone happy. If it meant IJ having meltdowns and being a total wreck at the end, it was not worth it.  Plus, that meant nobody was having fun. It is way more important that our kids think back on the holidays as a time they enjoyed, not a time they dread.

I hope you and your family have a wonderful holiday season.
Love,
Mimi

 

 

 

 

 

Brace yourselves! It's Pumpkin Spice Everything Season

Hey y'all!

Happy Sunday! With fall, pumpkin spice everything season has begun. And I will admit that I'm a true sucker for a PSL, pumpkin butter cake and the likes. I will also admit that it is pumpkin spice season here the whole year through. Paula Deen's Gooey Pumpkin Butter Cake has become a staple in this household to the point that we have converted my sweet potato loving husband and he requests it instead of a birthday cake!

Well, while on the ever so addicting Pinterest the other day, I came across this: Pumpkin Cheesecake Banana Bread

Two of my favorite things combined in banana bread, say what! Now I make a pretty darn amazing banana bread, my friend's husband will confirm that but even I had never thought of adding pumpkin to it. I'm not a huge fan of bananas, but I will eat up some warm, moist banana bread with my morning coffee, or afternoon coffee, well, with my coffee. I felt very Betty Crocker-ish yesterday and wanted a dessert to go with the potato soup and potato soup I made. Just so you can get a picture of this bowl of comfort, here it is:

 



This Pumpkin Cheesecake Banana Bread sounded perfect and so I whipped up a loaf. It's super easy and makes a delicious dense, moist slice of heaven. You might hear angels sing. At least according to my son, who ate it instead of dinner and had some for dessert. Personally, I will leave out the bananas next time and add more pumpkin puree, but like I said I'm not a huge fan of bananas. It was still very delicious! Especially with this cheesecake center!

Look at this perfect cheesecake filling!!!!

I know, I know, just beautiful, isn't it? What are you waiting for! Go get your Betty Crocker on and indulge in this pumpkin cheesecake goodness!

Have a blessed day! Love,

Mimi

What's one more?

Hi, happy weekend everyone! If you thought I was going to announce baby number 4, I am sorry to disappoint you. Ha! We're talking diagnosis. Who? You've guessed it! Mr. Chubby Cheeks. Y'all know he has a pretty impressive collection of diagnoses for his age but apparently there was room for one more.

While in Minot, we were pretty limited with specialists and so we never saw a developmental specialist. Until recently that is. I might have mentioned that IJ's pediatrician had put in a referral a while back (or my then pregnant brain might have forgotten to mention it). Well, it took me a minute to get everything for the pre-evaluation package together and we ended up seeing Dr. P right before IJ's birthday last month. I initially expected to get an answer about IJ's cognitive development, we knew he was nowhere near the level of a 4 year old and had our guesses but wanted a professional opinion. It was crucial for us to know because obviously it makes all the difference in discipline and understanding. We got our answer but this wouldn't be all there was to discuss.

At first Dr. P watched IJ play and interact with me. He gave me his spiel about who he is and what he does and that he has worked with plenty of kids with ADHD and Autism. There it was, the A word everyone else had been avoiding like the plague. I knew where this was going. You see, a doctor doesn't specifically mention these diagnoses if he's not trying to smoothly work his way up diagnosing your child with them. I've seen too many doctors and professionals in the past 4 years. Well played Dr. P. We were 15 minutes into the appointment and he already said we may have to investigate other labels. I asked if he was referring to ASD. He nodded. I told him I wasn't surprised. Dr. P asked me a multitude of questions, played with IJ and observed him. We were there for 3 hours. (Side note: On behalf of all nursing mothers and parents in general, warn us ahead of time that it'll be this long. All this talking and nursing made me quite parched, haha. I would've brought some water with me. Anywho.)

More questionnaires were sent home with us and we were to come back a week later for the actual evaluation. We returned with said questionnaires and answered more questions to see if IJ had the ingredients needed to fit the diagnosis. He did. And he wasn't one of those cases where it wasn't really clear, he's pretty generous with the ingredients, he has plenty of them. But I was always told that he's too social, he doesn't fit the bill. Well, how very wrong they were. Upon sharing the news with family and friends, we received condolences from quite a number of them. And we understand they meant well. However, we don't need them. You see, we've been down this road for 4 years now. We knew we had to expect more possible labels. And really we're just changing from SPD to ASD. Autism is not the end of the world. And part of us is relieved, even glad. IJ needs behavioral therapy, but without the ASD diagnosis he would not have qualified, no matter how badly he needed it. And most importantly, it doesn't really change anything, he's still the same kid. He's still the loving cuddle bug with the crazy fro that he's always been. With that big smile and infectious laugh. The kid that gets handed a quarter from an elderly person because he's just that cute. The kid that made his physical therapist carry him although it was part of his therapy to walk because she simply couldn't say no when he asked to be picked up. The only difference is, we will be able to enjoy him so much more because ABA will help him with his meltdowns, express his emotions and to make sense of a world that doesn't make any sense to him so that it will be less frightening, less overwhelming. And it'll help us make sense of his world.

So really, what's one more? ;)

Love,
Mimi

Why I haven't blogged in a year

Here we are, a little over a year after my last blog post and I realize I owe you an apology. I left you all with the announcement of baby number 3 and y'all never got to see her! So here she is:

 

Ariel Jemima

But now let me address why I was absent for such a long time. Obviously I've never been good at posting weekly, life happens you know. But I do realize I've never been MIA for THIS LONG! I had all the intentions to keep you updated on our adventures in Germany, what I did to the house we're renting to make it a home, the sewing projects, the crafts, Isaiah's progress with treatments, etc. But then it all came differently than I expected. Well, for one my pregnancy was pretty hard on me. I started with mini stroke like migraines that often left me unable to do anything. And with my husband gone TDY quite often, this became harder and harder. I was tired 95% of the time, throughout the entire pregnancy, physically in pain every single day. The one thing that helped a little was Isaiah starting preschool. At least a few hours in the morning I was able to rest if I needed to. But his behavior started to become an issue and dealing with meltdowns while pregnant can be a challenge. Physically and emotionally.

However, not only the pregnancy was rough. Joseph was pulled from one TDY because it collided with my due date so he could be there for the birth. I was considered high risk because of Isaiah so I went for checks bi-weekly. At 39 weeks Joseph and I went for my last check. Since I had lots of amniotic fluid and high blood pressure I was scheduled to be induced the next morning and supposed to get admitted the same night. Everything went well, "beautiful" contractions. Is there such a thing? I was sure it would go just as quickly as Isaiah, if not even quicker. Oh how wrong I was!!! With every push she went up instead of down, she kept turning herself to the side, much like Isaiah but somehow wouldn't go through the birth canal. After several attempts it became clear we had to do an urgent C-section. She was born 21 April, weighing 6.5 pounds. She was healthy and beautiful with a head full of dark hair, just like her siblings. But I had lost quite a bit of blood, which made my hemoglobin drop to 5. They said it was truly a miracle I had not passed out. I needed two blood transfusions to get some color back in me and my hemoglobin up. After 4 days we were sent home and I was put on an iron supplement and told not to lift a finger. Y'all know me, that's pretty hard for me. A few weeks after I had recovered Joseph was sent TDY again. All while Isaiah had a 3 month summer break!!! I think I gained another 50 gray hairs. Without his class routine the meltdowns were back and in full swing. With a newborn and Isaiah I had little time for anything. Isaiah went back to school this month so I have 2 1/2 hours to get stuff done, if Ariel works with me that is. So get ready for more posts from now on.

Love,
Mimi

An announcement and a new diy dining room table

Hey y'all!

Since getting our household goods back in mid September, we've been unpacking and organizing, turning this house into a home. But as my fellow military friends know every house is different, so furniture you have had may not fit or closets you had in the previous house may not exist. The latter is very much the case for us. You see, it's not exactly common in Germany to have built in closets. A lot of homeowners are now adding them to their newly built houses but there are plenty of houses where you need to buy armoires, or what the Americans here now refer to as a "shrunk" (they actually mean the German word Schrank, which basically means armoire or wardrobe). Anywho. We got some basic wall lockers from the military for our master but after FMO came to pick up the loaning furniture we had to get some furniture for this place.

We went to one of my all time favorite stores - Ikea! Oh how I have missed you! The kids got some armoires and we bought some shoe storage to go underneath the stairs in the basement. On our next trip there we also got a entertainment center for the playroom but you'll get all the deets at an upcoming house tour ;)

The only thing we couldn't decide on was dining room set. See, I'm frugal and after seeing how some of our furniture was treated by the movers, there was no way I'd spend $600 or more on a table that might possibly get damaged during the next move. Especially since the one my heart was longing for sold out on www.home24.de (insert major sad face here). I wanted a farmhouse table, something bright but rustic. Then I remembered my good friend Pinterest and all the lovely plans I had pinned for redoing and building furniture. Joseph called me crazy, no really, those were his exact words!

He's the type that buys furniture new, hopefully having to assemble as little as possible. So I think part of him was nervous about the work I just volunteered him to and the other part questioned the sanity of his 4 months pregnant wife. And there you have our announcement! We're due towards the end of April and are just as surprised as you are because it certainly wasn't planned! See how I did that? Smooth, huh? No? However, he should have kind of expected this. I have a pattern. When I was pregnant with Nia I built a faux fireplace that now cozies up my friend Stephanie's home, when pregnant with Isaiah I refurbished a toddler bed for Nia, painted the nursery and sewed Nia's bedding set. So why break the tradition this time?

I took the plans from Jamielyn over at iheartnaptime, who got the original plans from Ana White, the queen of all things diy! You can find the post here. I changed things a bit though. I didn't drill pocket holes, instead I used l-shaped steel brackets. I got all my supplies from OBI, a German store like Home Depot. I ordered the curved legs and the table top, I went with a table top instead of single planks this time. Everything was bought in one trip, the stain in colonial brown, the paint in a greyish white, spax screws, the brackets, sandpaper, paint brushes, clear coat and of course masks! Gotta keep that baby safe. By the way, the stain and paint we used didn't have strong fumes anyway, since this isn't my first rodeo I knew which ones to get.

My dad came for the weekend and he was actualy pretty excited to help me with my project. Four hands are simply better than two. Together we assembled the base of the table with the nifty brackets, spax screws and my beloved DeWALT drill. SPAX screws make your life so much easier since there's no pre-drilling required with the pine wood I used. After we assembled the base, I sanded it with 180 grit sand paper and painted it with OBI 2in1 paint (primer and paint in one). It only took two coats to achieve the look I wanted. While the base dried I sanded the table top. The next day my dad left so the rest was all on me. I stained the bottom of the table top but only the parts you can see. It's a water based stain so it dries rather quickly. Once dry I attached the top to the base and stained the top. I used an old T-shirt to wipe off the extra stain in between, giving it a smoother and more even look. After 4 coats I was happy with the color. Once the stain was dry, I put on the clear coat.

It was an easy 2 day project. The cost of the table was about 160 Euro, half of what it would've cost at the store in this size. I still have enough stain and paint for the chairs and probably even other projects so I could've spent even less. The only thing that required Joseph's help was carrying it into the dining room from the garage. Here it is still without chairs:

As you can see the table top has a more rough and rustic look which is exactly what I wanted. The table at the store looked too polished for my liking. I think it gives it more character. For the chairs we went to, you guessed it, Ikea. We bought inexpensive wooden chairs for 19.99 Euro a piece, unfinished so I can stain and paint them to match the table. This will have to wait until the spring though, in the meantime we're using the chair covers we already had.

The centerpiece is the greenhouse from Ikea with some led candles and fall décor in it. I still need a few items for it. I'm also thinking about getting two wicker chairs for the short sides of the table and put the three covered chairs on each long side. My dream wicker chairs are $100/each though so I might need to settle for a cheaper version. I also haven't decided on a rug yet but I know I want one to go underneath the table. It was a fun project but I have to admit I missed my dear friend Ally from Home by Ally.  When we were stationed together in Minot, we'd go thrifting together, sew together and she was there for Isaiah's birth. You should go check out her page! She's super talented with both furniture and photography and if you're in Florida and are looking to buy a home, she's your gal as she's also a licensed real estate agent there. If you're lucky you can go snag one of her redone pieces at Vintage Living Marketplace. She would've been my perfect partner in crime for this, especially now that Joseph asked what I'm building next.

And just because the pregnancy announcement wouldn't be complete without a picture of baby, here you go:

Love y'all!

Mimi

Why I disappeared

Hey Y'all!

Except for my just now published post that I wrote back in February, I have been MIA since said month. There are a lot of reasons for that!

#1 I was stress paralyzed. No seriously. For several months. I mean I moved around, worked out (yes, I actually hired a personal trainer! What!) met with friends, etc. But I was still so swamped with therapies, between Nia and Isaiah we had 6 sessions a week! Add work, Dr. appointments and the household to the equation, the physical and emotional exhaustion of a 7 month deployment and wait for it, an international move by myself (apparently I did so well by myself during those 7 months, I needed another 2 months by myself!) and voila, I give you a mom having a 6 month moment!

#2 I was preparing for an overseas move that I was going to master by myself, yet again. In March we received our assignment, a special duty assignment in Ramstein, Germany! Something Joseph was selected for, something we've been waiting for ever since we hit the 2 year mark in Minot. But this assignment didn't turn into orders easily. We had to fight for it, appeal their denial for Isaiah's medical clearance. I could go into the details but that would another blog post. Let's just say the joys of military health care....

#3 With preparing for this move came more things than just the obvious selling stuff, canceling memberships, packing and cleaning. When you have a special needs child, you have to prepare for far more! Getting medical records from every specialist, like that 400+ page CD the hospital sent to Isaiah's PCM but then miraculously disappeared. Meetings for exiting out of Early Intervention, final meetings with therapists, the school district, IEP team....

#4 I honestly felt like I had nothing important to say! I've felt like that for a long time. I now think it had a lot to do with my emotional exhaustion. I felt like I had nothing important to say because I didn't feel important. Don't feel sorry for me though. I've snapped out of it. It was just part of that moment I had.

#5 I'm grieving. With a move come many goodbyes, some aren't a big deal at all, you actually may feel relief. Others are painful but after the first couple of months you're ok. Then there the few that tear at your very soul! I had only a select few of those. People, where the very thought of them still makes me break out in tears 4 months later.

It also didn't help that we didn't have Internet from July til October. We've had a crazy past 6 months! But that's part of the military life. Just like the TDY we were graced with a week after the kids and I joined Joseph here in Germany. Now many of my friends and family said it's not fair because we just got reunited as a family. Well, that too is part of the military. And of Joseph's job here. He's not working his regular job, he has what they like to call a "TDY job". His unit sends people to different locations for a short and sometimes not so short time in order to do different jobs. We just happened to get here right before one of those TDYs. It was supposed to be 3 weeks, it turned into 2 months. Right before his return, I received our household goods by myself. Seems fair, I mean I sent them off myself. And yes, we were told I could just stay behind because I'm just the spouse. I'll address this in another post ;)
Anyway, those TDYs are the price we're paying in order to be here. We knew this was part of the deal, do we love it? No. But it's a price worth paying to see our children be with family, mainly they're Opa, my dad. His world is not complete without them and neither is theirs. They have an incredibly special bond. Or to see Isaiah's health improve immensely! Seeing him getting treatments, medications and therapies he needs, without me having to fight with doctors! Priceless!!! I will go into the details another time. For now I'll leave you with this long post.

Love,
Mimi

Do you really understand how I feel?

Disclaimer: This post was originally written in February 2014 but was never published.


Remember I said I was going to address the last group of people mentioned in my last post? If not, read about it here. Well, I noticed I barely even covered the other 2 groups of people. I really just addressed the friends that want to help us cope but go about it in not exactly the best way.

So let me address the "I know how you feel" and "I get it" people. They more than likely don't know how you feel and don't get it. Unless, they've walked your and your child's walk, they will only be able to imagine how you feel. And even if their child has gone through something similar, our stories all differ in one way or another. So there are things I can relate to and some I can only imagine. And sometimes even that is hard. But that's OK! What we all need to remind ourselves of is, that those kind of friends really want to help but don't know the right words to say. At least the majority of them. So be patient with them, smile and say thank you for listening. You don't need to tell them that they really don't understand, they more than likely know it already but simply didn't know what else to say. It can be difficult to find the right words to say. Friends, let me tell you, sometimes the best thing to say is nothing at all. A hug, holding our hand or just a comforting smile can go so much further. Being honest about the fact that you can't even imagine how to feel is ok too. You don't have to know the right words to say. All we want, is to know you're listening and that you'll be there if we need you. That's what means the most to us.

Now about that last category, I've had friends who told me "he doesn't look like he had a stroke" when they found out about Isaiah's diagnosis back when he was a baby. Back then I had mixed feelings about this statement, on the one hand I knew most of them meant well. But at the same time I couldn't help but think "what do you imagine a stroke survivor to look like?". At the time Isaiah was a baby, so he didn't do much just yet. He wasn't sitting up yet, crawling, walking, talking, so his disability was barely visible at all. He clenched his right hand in a fist and had a hard time pushing up on that hand but for the untrained eye he looked like every other baby. Pediatric stroke shows itself in many different ways, some kids had a stroke and there are no issues at all. Hence so many kids going undiagnosed til later in life. Others were so affected by it that their disability is more visible. Not every disability is visible, someone with a seizure disorder (many stroke survivors have seizures) for instance, does not look a specific way. Now that we've come a long way thanks to therapies and hard work, I'm reminded what an amazing fighter Isaiah is when people say it. Let me tell you just exactly how hard this boy fights. As you already know, Isaiah has right sided hemiplegia, weakness in the right side, because of his stroke. He uses the right hand really well but mainly as an assisting hand. Lately however, he's been trying more and more to use the right hand primarily and assists with his left! Especially at dinner time. He even gets upset when we offer him his fork or spoon and try to put it in his left hand!

Time changes things. 2 1/2 years ago I was more upset at people saying he didn't look like he had a stroke, today it makes me proud of how far he has come. I initially wrote this post because of an inspiring comment from a fellow stroke survivor parent. But also because I came across so many parents being mad at everyone who doesn't know the difference between a brace and a cast and instead of raising awareness and educating them, they unintentionally push them away. Don't get me wrong, there are plenty of moments when I feel everything but kind enough to explain. When a bystander tries to tell me what to do about my son's meltdown for example, thinking he's just having a tantrum and not knowing the difference. Or a friend telling me he's going to grow out of it, whether they refer to the seizures, the sensory issues or the stroke altogether. Sometimes it is not easy to smile and explain but at the end of the day it makes more of a difference than pushing someone away because you felt their statement was ignorant or hurtful. By explaining in a kind way I may increase their knowledge and understanding and therefore change their view.

Love,
Mimi

Are we ever done?

This question was brought up by a fellow stroke survivor mom today. A friend of hers told her she had not dealt with the traumatic experience surrounding her child's birth and the diagnosis. She couldn't help but think 1) So what? 2) How exactly does one deal? 3)How do you know you've dealt with it? 3) Are we ever done?

I am sure her friend meant well, just like those friends who tell us "I know how you feel." or "I get it." Then there are the ones who think you're way too sensitive about everything because your child seems fine (to their eyes). I've met all of them. Most of them mean well in their own way. But for us as the parents going through it, we often wished they didn't say anything at all.

I understand why she thought "so what?". We all deal with things differently, and honestly, just because she may not deal with it on the outside doesn't mean she's not dealing with it internally. Each person is different. I remember when Isaiah stopped breathing in my arms and was taken to the NICU, I broke down crying. I cried several times that day and the days to follow. The doctors before knowing what was going on, mentioned different possibilities. Joseph wanted to know what each diagnosis entailed. I didn't want to know a single thing until they knew what it was. I didn't want to worry about things that weren't yet confirmed. I also cried when we received the diagnosis, not immediately, I had to be strong for my children. But once the doctors were gone, the tears starting streaming. Joseph on the other hand thought - A LOT. So much he constantly had a headache. I researched. I talked. Then cried some more. Sometimes I cried while I talked about my research. He was quiet. Had I not known my husband I could've thought he didn't deal with it. Truth was, he WAS dealing with it. Just differently than me. This is so crucial to understand, especially for couples! But also for all of us. We all are different, therefore we grieve differently, we solve problems differently, we tackle new situations differently. And that's ok. Here's what's not ok: Telling someone how they should deal with a traumatic life-changing diagnosis. Instead tell them you're here when they want to talk. Or when they need anything. And mean it.

Now to number 3, it'll get easier revisiting those moments. It will never be easy. But with time, thinking back won't give you that paralyzing feeling anymore, that feeling that you can't breathe. You'll still get choked up and you may cry but this moment will not just be a moment of sadness and pain. It will also be a moment of remembering what your child has overcome, how far your child has come since. You will be able to talk about it and actually finish a sentence without breaking down. That's how you know you're dealing with it. You will be aware of the diagnosis and accept it. You will love your child the way they are and not want to change them even if you could. Will you still wish things were easier for them? More than likely. But you will also admire your child's strength, their courage, their love for life, their ambition.

Notice I used "dealing" and not "dealt". Here's why: You're never done dealing with it. Sarah, another stroke survivor mom put it very beautifully:

                           "(...) the grief and emotions surrounding the diagnosis of lifelong medical, physical, emotional and developmental issues will take place in stages and will most likely last until you die. Grief does not equate depression. It does not equate self pity or wallowing in despair. It ebbs and flows as life takes place, as new challenges arise and old challenges are overcome. It changes as you and your child grow, mature and age. (...)"

Grief does not equate depression or wallowing in despair. However, you can experience them at the same time. But I can also grieve and still have peace. The difference lies in visiting that moment and living in it. I choose to live in the joyous moments, the fact that Isaiah survived, that he's walking, using his right hand so much better than anyone thought. That he's somewhat talking, that he's a happy, healthy child. I have to visit the dark moments here and there, but visiting them is not a bad thing. It makes me so grateful because I know it could've gone the other way. This was my response to the post:

                           "(...) I went through stages and still do. I still get emotional when I have to talk about Isaiah's birth, how he stopped breathing in my arms and his journey. Now, more because I am grateful that he survived and how far he's come but it's always accompanied by the pain and fear we experienced, otherwise I wouldn't feel grateful I think. There are times when we're ok, then we face a new hurdle and we can't help but grieve again. It's not that we don't accept it, not that we don't love our children the way they are, not even that we would change them if we could - after all it's what makes them who they are and who we love! But how can you not continue to 'deal' with it when it's YOUR child that has to overcome all these obstacles, work harder, etc. How can you be a loving parent and not hurt because of it? For me the hurt and the joy walk alongside each other. (...)"

I have to say I always had peace, even when we didn't know what was going on, when Isaiah was in the NICU, hooked up to all the monitors, paralyzed. My peace came shortly after I broke down after he was rushed to the NICU. My peace came in form of a whisper, a whisper that calmed the raging storm. You need to know that my first pregnancy was a miscarriage. Nia was delivered early because the doctors were afraid she'd die. So when Isaiah stopped breathing, the enemy tried to stir up fear in me. The fear that he now was really going to take my child. That's when God reminded me that he had promised me a healthy child. The fear subsided the moment I heard His voice. I didn't know what was going to happen but I knew that He was in control and that with His help we could tackle whatever was to come. 

So no, we're never done. I rejoice when Isaiah hits a milestone but I also hurt when he has a setback. I get excited when he has a breakthrough in therapy but can't help my heart aching when I see him struggling to walk because his leg keeps giving in. He's my child, he was given to me to raise him, nurture him, protect him and love him. I will address the last group of people in another post. It's been an emotional day, or rather week, as Isaiah had another absence seizure last week during speech therapy. Thankfully, this time it was just 10 seconds long. Still scary though. See, I'm still dealing....

Love,

Long time no see...

I've been MIA for a while again. I'm sorry. We've had lots of stuff going on! Joseph's back from deployment (pictures to follow), my dad was here and in the midst of it all we started speech therapy and now have appointments 4 times a week, soon 5 times a week. While Joseph was gone some things happened that kept me from getting on the computer to write posts. One of my biggest fears came true.

As you all know, Isaiah has always had issues sleeping, first it was falling asleep and staying asleep. Then falling asleep got easier but staying asleep remained a problem. We had about 5 nights since his birth that he slept through the night. Late November falling asleep had been a big problem again. It took him 45 minutes on a good night, two hours or more on a bad night. He was so tired, he wanted to sleep but his body wouldn't let him. I massaged him before bed time, brushed him, gave him bear hugs. We've used the weighted blanket but nothing seemed to work long term. When he finally closed his eyes, his body was still restless. So he tossed and turned until finally his body gave in. Not only was it hard to watch, it was also exhausting. Obviously if Isaiah doesn't sleep, I don't sleep.

My biggest concern was possible seizure activity. It always is. And even though so far nothing showed up on EEGs it never stops being a concern because you just never know when a seizure might sneak up on you. For the past half year I've been sure Isaiah's been having so called absence seizures. It wasn't until December 6th that I had someone else witness them and now I am certain. That day during Occupational Therapy Isaiah was in the middle of an activity when he suddenly stopped and almost froze. My first thought was he was doing a number 2 because for a toddler that requires all of their attention and focus, lol. When he didn't respond to his name, I checked his diaper which was clean. What was odd was that he didn't move an inch when I checked him. His therapist looked him in the face and called his name as did I, nothing. She touched his face, nothing. After what seemed forever but really was just a good 30 seconds, he snapped out of it and it was like nothing happened. It's scary and devastating because there's nothing you can do in that moment. We talked to his pediatrician about it but again the EEG results from last time were just too good to suggest medication and since he had a stare that I reported that was not an absence seizure, he just informed the neurologist but didn't suggest anything else. So now we'll be using a journal to write everything down with dates and times, etc. It's the only way we can determine what our next steps need to be. I am thankful we haven't dealt with any grand mal seizures since his birth but I'm afraid that this was the prelude to some in the future.

It wasn't the only thing that had me occupied, Isaiah was measured for his SMO and UCBL. For those of you who are not familiar with the different kinds of orthotics, this is an SMO and this is the UCBL. Isaiah's right foot has been pronating so badly there's no way around it anymore. Many of you will remember me mentioning him needing one a long time ago but what does a mom know! Hopefully, he'll get them soon. But that also means adding another appointment to my already full schedule. He will pick up PT again to make sure everything goes well with the orthotics. So if you see a scatterbrained mombie running around, that's probably me!

I still owe you guys Isaiah's birthday post, homecoming pictures and Nia's birthday post....I'll get to them soon. At least they will all be much happier posts!! Thanks for reading through all this and for following us on this journey!

Love,

MRI and Denver

Has it been a month already???? Well, actually more than a month! Where has time gone? Oh my.

Anyway. We survived the MRI and we're back from Denver. The MRI went well, the sedation went without complications, I wish I could post the video of Isaiah licking the DVD player but for some reason I can't. Maybe it's better that way, he may not be too happy about this in a couple of years, haha. Waking up was not as much fun. He was very confused and upset when the nurses handed him to me. I had a very hard time holding him and was quite afraid that I might hurt him. He wanted to get down, kicked and swung his arms. At least the results were good, it showed no new damage only the damage from the stroke is still visible.

Before sedation

MRI check! Now off to Denver. Evaluation with Dr. Miller Tuesday was a success, for Dr. Miller...he got Isaiah wound up after a race down the hall. Thanks again! A 24hr EEG was scheduled for the following day. I envisioned Isaiah pulling out the electrodes and wires but for some reason he was pretty content with the new headgear and superman backpack.

Look at him!

The nurses adored him but that's nothing new, lol. Sissy joined us after playing in the sibling room for a couple of hours.

He did very well, too well almost. The night wasn't as restless as usual and we all slept surprisingly well at the hospital. We got the results the next morning. Isaiah's EEG was amazing according to the doctor, considering that he suffered brain damage before birth. There was only 10% abnormal brain activity, always limited to one area in his left temporal lobe. This is no surprise as it's the area where the stroke caused damage. This is not bad news either. A certain percentage of abnormal brain activity is actually quite normal for a stroke survivor. It also is proof that his late night awakenings are a result of said activity. 10% are too low to medicate. What does that mean?  There are spikes and waves, but it doesn't come to a seizure. At this point, it's not harmful which is why Isaiah does not get medicine. That's the good news. The not so good news is, that we still have no answer as to what will help him sleep through the night. So back to trial and error we go. We have discussed bringing Melatonin into the mix if all else fails. The weighted blanket has almost lost its powers, that's the problem with sensory issues that are subject to change. I can't tell you the last time Isaiah and therefore I, slept through the night. Sigh. 

I know I've promised you a post about Isaiah's birthday and I shall keep that promise. I will also attempt to post about the S.T.O.M.P. training I attended recently. For those of you not familiar with S.T.O.M.P., it stands for Specialized Training of Military Parents. They specialize in training parents of children with disabilities, share information about IEP, SSI, guardianship, PCS, etc. Let me just say, this two day training has been such a blessing that I want to share their wisdom with you all! Til then go check out their Facebook page.

Love,

Persistence pays off

Oh how time flies when you're having fun....or when you're swamped with a ton of things to do. Since the last time I posted we've gotten a lot of things rolling. Isaiah had his 2 year check up where we discussed the things that have been going on for the past few months. We decided to have a neurological evaluation done at the Denver Children's Hospital, an OT evaluation to determine where we stand with his sensory issues and an orthotics evaluation to decide which direction we're taking as far as his right foot is concerned.

After receiving all the necessary referral approvals, all appointments were scheduled. Isaiah now has cookies in both of his shoes. We're watching him closely to see if they're enough or if we need to step it up and go with a SMO. SMO stands for Supra-Malleolar-Orthotis, it's part of the Ankle Foot Orthoses (AFO) family, and help maintain a vertical or neutral heel while supporting the 3 arches of the foot. It supports the leg right above the anklebones (malleoli) which is where it gets its name from.

Picture taken from www.surestep.com

Isaiah is one of those special cases where it's not clear which route to take so we're trying the cookies first and see how he does with them. So far he's doing ok. A little less tripping and stumbling, however when he runs he still trips and falls. He also still drags his foot but it doesn't look as bad as before. My main concern still persists, his foot and ankle still pronate a lot. We'll see if it just takes some time or if we need to address the issue again. The same day Isaiah got his cookies (probably not the kind of cookies he expected when he heard me tell him he was going to get cookies, haha), my mother-in-law and sister-in-law flew in from Georgia. They spent the following 3 days with us and glam-ma spoiled the kids rotten. It was a very nice change for the kids, especially as it was the first time Isaiah got to meet his grandma and aunt on his dad's side and Nia didn't exactly remember them. The last time she saw them she was a year old. Shortly after they left I got into busy mode, I had to find out how to get reimbursement for travel expense approved for the three of us for our trip to Denver. Not an easy task when nobody knows which direction to point you in. After making lots of calls I finally got travel for all of us covered. Usually only the patient and one guardian are covered but with Joseph being deployed, I obviously have to take Nia with me. Plane tickets were booked and pick up/drop off arrangements and reservations with Hotel Sasha, aka Sasha's house were made. This is one of the upsides of the military life, while you often have to say goodbye to good friends, you'll also have friends all over the world ready to take you in when you end up in their neck of the woods. More importantly, this bond is so strong that you don't even need to ask, the second they receive the news that you'll be in their area, they're already making mental sleep arrangements for you. In this case she has no idea how much that is helping us! Isaiah will not only have an evaluation, after talking to the neurologist on the phone and discussing the history, he ordered a 24 hour epilepsy monitoring. The room is set up for 2, so chances are Nia may not be able to stay with us overnight. Dr. Miller also ordered a MRI as the last one was shortly after birth, and we've seen some drastic changes in his speech development since the last evaluation. The MRI will be done on Wednesday here in Minot, and I'm a nervous wreck just thinking about the sedation! It's a tricky situation when they're this little. So pray for us please!

We will leave here for Denver on the 30th of this month and until then I still have lots to do! There are not enough hours in the day so I guess a subscription to Starbucks would make sense....is there such a thing? There certainly should be! Once we're back, Isaiah will start OT, after today's evaluation Krisann was positive direct therapy is the right thing for him. When we had our phone conversation prior to scheduling the evaluation she already suspected it. The visit today was a sure confirmation! While it is not easy to add yet another label to the ones he already has, it is great to know that he'll receive the therapy he needs. It took some time but it was well worth the persistence.

In another post I will try to explain Isaiah's sensory issues a bit so that it will be easier for all of you to understand. I'm still in the process of getting familiar with is myself, it's a rather complex matter. I still need to share Isaiah's second birthday with you, and that is something I will enjoy writing about much more!

Thank you all for following! Love,

Ignorance is bliss.....sometimes

Hey y'all!

There's one thing I most certainly cannot stand, ignorance. BUT sometimes ignorance sure is bliss. Like when Isaiah is completely oblivious to the fact that his leg just gave in for the 5th time tonight. Let me just say Isaiah had a pretty tough day yesterday physically, well, maybe I had a much tougher day witnessing it than he did. Most of you who have followed us from the start know that the Hemiplegia causes Isaiah to pronate his right foot A LOT and he trips and drags his foot towards the afternoon. We usually start the day out just fine. Most people can't tell he had a stroke even after I tell them about it. Only when I point out to them what they need to look for, they are able to see. Well, not so yesterday. When Isaiah woke up he was already pronating a lot and started to drag his foot. Throughout the day it got worse and worse, and there was nothing I could do, he doesn't have a brace that could support his foot, and he most certainly wouldn't let me carry him with all the other kid running around. He was posturing his arm a lot too. Towards the evening his leg gave in several times, he was barely able to stand without his leg bent. It was extremely hard to watch.

The only thing that helped me fight back my tears was the fact that Isaiah wasn't in the least concerned, he seemed completely oblivious to his handicap. He continued to run, fall, get back up and run again. We know about his stroke, the Hemiplegia, him falling more than others. To him, it's all he's known, yes it was worse than usual and I'm sure he was aware of it. But he's had to work a little harder since the day he was born, so to him it was just another challenge he tackled, and he succeeded. To him it was a success because it didn't keep him from doing the things he wanted to do. I am extremely proud of him but at the same time, my heart breaks seeing him like that and knowing things could be different. I called his physical therapist this morning to give her the update and hopefully she will be able to set up an appointment with orthotics. I have no doubt that God has healed him and that it's just a matter of time til we will physically see it. We've seen him go from pretty much paralyzed in his right side to using his right hand as his assisting hand so well that people can't tell he had a stroke. This may look like a setback but I'm certain it won't be long til Isaiah will amaze us yet again. In the meantime we will do whatever it is God wants us to do to help him get there.

Love,

Adding a new label

Hey y'all!

As I mentioned in my last post, there was one more thing we learned about Isaiah that I at the time wasn't ready to share yet. Partly because I had swamped y'all with a lengthy update, and partly because I was, and still am, in the process of figuring everything out. It's not that I'm overwhelmed with the news, because really, it's not news to me, I just don't know enough about it and am still educating myself. Isaiah seems to have to have sensory problems, at this point we're not sure if we're talking about Sensory Processing Disorder (SPD) or simply some tendencies, but we do know that he is sensory seeking in some areas and more sensitive in other areas. Some of you may remember me mentioning this last year around this time when we came back from the CHASA retreat here. Back then there were a couple of things that made me think that but when I mentioned my concerns to the pediatrician he dismissed them as being age appropriate. So I second guessed myself, I mean, after all he's the professional and chances were he was right. Now, a year later, I brought it up again. This time to Isaiah's OT (Occupational Therapist), he was here for Isaiah's first consult. Initially, we were just going to discuss Isaiah's arm and leg but Kelly, our MIDP interventionist, encouraged me to mention my concerns. Sure enough, our OT agreed that it would be a good idea to look into it. He recommended a couple of things, one being a weighted blanket. A month prior I had looked into weighted blankets but wasn't sure they're right for Isaiah. Anyway.
He told me about a local mom who makes them really cheap so I quickly ditched making one myself! Her own daughter was diagnosed with autism and when she learned how much those blankets cost, she was shocked. So she made her own, and is now making them for others, along with vests, I spy pads and neck pillows. She's not a professional seamstress, she's simply a mom who doesn't want parents to have to spend an arm and a leg, just to give their kids what they need. You can find her Facebook page here.
We picked it up yesterday and Isaiah likes it a lot! He usually kicks blankets off at night, not this one! He actually looked for it in his sleep!

Isaiah taking a nap with his blanket from Weighted Dreams

We have yet to get Isaiah evaluated, which I will request at his Dr. appointment this month. However, I'm currently reading "Raising a sensory smart child", and although I'm still at the beginning of the book, there are lots of paragraphs where I've scribbled "Isaiah" next to it! So many things make so much more sense now. It's quite possible that his desire for stimulation makes him scratch so much, which in turn affects his dermatitis. I also bought "The out-of-sync child has fun", which is written by the author of "The out-of-sync child" and suggests activities you can do with your kids. When looking into books, I had an incredibly hard time. While all the books I found were great, most of them focused on a hyper sensitive children. Isaiah, however, is mainly sensory seeking with some hyper sensitive tendencies when he feels like he's not in control. I think the two books I got are a good start though. Once he's evaluated, we can hopefully start direct OT and learn how to help him understand his body better and get the sensory stimulation he needs without it interfering with his daily life. I try to keep Joseph as up to date on those changes as possible but it's difficult for him to fully understand what all this means. By the time he comes back from deployment we will more than likely have started OT, established a different routine and have made adjustments in our daily life. That's one of the downsides of deployments, time does not stand still while they're gone. I might get the kindle versions of both books so I can send Joseph the hard copies to read in the little bit of free time he has. So here we are, adding yet another label to the ones we already have. And yet I am not discouraged. Quite the opposite, I'm relieved. To me those labels mean clarity to me. Without them I'm just guessing and experimenting. They also mean Isaiah will get therapies and treatments that will help him, services he wouldn't get without those labels. So off we go on a new journey, pack your bags and come along ;)


Love,

Holy Evaluations!

Hey y'all!

I know it's been A WHILE since I last posted. Well, as y'all know Joseph is on deployment. Shortly after he left I went to the Parent Leadership Institute from Family Voices of North Dakota and then Murphy's law kicked in where ever possible! I knew things were going to go wrong because that's just how it works when they're gone but you're just never fully prepared. For starters I got super sick right before the PLI but thought I'd kick it just as quickly as I had caught, yeah.....NO! It got worse at the PLI and only buying half the local gas station's pharmacy brought me a little bit relief on the last day of the institute. On the way back home I left my phone at Red Lobster and didn't notice til I unpacked the truck in my garage....two hours away from the restaurant. So back I went after dropping the kids off at my friend Sara's. And as luck or Murphy's law would have it, I got a speeding ticket for being 5 miles over on the way back from the restaurant! The day after that my car's left dipped beam, or front light as regular people call it, stopped working and a day after that I managed to crack my windshield. Go me! NOT! Of course our insurance doesn't cover that type of damage in North Dakota, go figure with those freezing temps of -57 degrees, potholes everywhere and rocks hitting your windshield every other minute! So there goes our trip to Greece. But that's ok. On top of it, I've been having computer trouble so getting on the internet was only possible with the iPad or kindle (if the kids allowed me to use either) and writing a blog post on those is kinda blah.
On the plus side I learned a lot at the Parent Leadership Institute and after an emotional breakdown on the last day while talking about our visions and plans, I came out much stronger and more determined.

Many of you have followed Isaiah's journey and know how hard it is for us to get the doctors and therapists to see what we see. Meanwhile we watch Isaiah struggle and suffer. All this was the reason for my emotional breakdown at the institute. I had decided to stop giving in when I get a no. I had decided to keep bugging until my son gets whatever it is he needs. See, it's not like we want something to be wrong, we don't want him to need a brace or speech therapy, or undergo sedation for an MRI. I don't think any parent wants that for their child. However, we also don't want to be in denial when there are issues. We knew he needs an SMO, speech therapy, allergy testing and at least an EEG to determine what his speech loss was all about.

So here I was with my newly ignited determination to not back down, even if that meant upsetting people and stepping on toes. See, most people who know me think I'm super blunt and won't take nonsense from nobody. That is true to a certain extent. If I don't know you, yes. But if I know you I'm too worried that being too straightforward might influence our relationship negatively so I'm not as pushy as I'd be with strangers. The same goes for our doctors and therapists. We've seen them from the beginning, Isaiah's ped literally saved his life when he stopped breathing in my arms. How do I tell this man that I think he's missing something without making him feel like I'm questioning his knowledge as a doctor? I discussed my concerns with Kelly, our Infant Development consult. She's very understanding and was quick to help me set evaluations so we could get things started. Just a little over a week later we had Isaiah's speech and PT evaluation. Ever since Isaiah had those two episodes where the threw up out of a sudden in the middle of playing and lost pretty much all of his vocabulary, I suspected he'd need speech therapy. The last speech evaluation we had, the therapist thought he was right on track with his expressive skills and advanced with his receptive. I disagreed, while he was able to repeat an array of words, he had very little spontanious expressive speech that he used without prompting. Plus, he barely uses words during play, only sounds. This time the eval was done by the university's speech clinic. They did a thorough exam and agreed that he needs direct speech therapy. So speech therapy: check!

That same week we did the PT evaluation. We kept telling his ped and PT therapist he needs an SMO but since they usually saw him in the morning and only for a short period, and PT consults are usually at our house where we're mainly in the playroom, so it was difficult for them to tell. Not this time! We scheduled the eval for the afternoon at the clinic where there is lots of space for him to walk and run and I made sure Isaiah got a lot of physical play time before the appointment. It also helped that he fell asleep in the car on the way to the clinic so he was still kind of tired when we started the eval. Nancy agreed that it is time to get him an SMO and we were relieved that Isaiah would soon be able to walk easier. SMO: check!

Shortly before Joseph deployed, Isaiah had a dermatologist appointment. When his ped first issued the referral to see the dermatologist Tricare denied skin lesions to determine if he had any allergies, much to our disappointment. Unfortunately, Tricare had much of an "let's treat the symptoms, not the problem" attitude in the hopes that it will cost less. Usually however, it ends up costing them more. So after an entire year of trying cortisone creams, ointments, syrups and the likes - and it severely affecting Isaiah's pigmentation and quality of life, the dermatologist said it was time to push for allergy testing....ain't that what we told her the entire time!?! Good thing Joseph took Isaiah to this appointment because I might have just lost it right there. Anywho. Notes were sent to ped, ped sent referral to PCM (Primary Care Manager on base), who then sent it to Tricare. This time they approved, well......we were in the process of transitioning to a new company and they issued a referral waiver so no referrals were being processed and therefore automatically approved. Allergy testing: check! Sadly, the test came back normal. At Isaiah's age they didn't want to do a blood test so they only irritate his skin. Plus, his back is small, so they don't test for everything, just the most common allergens and the dosage is much lower than it would be for adults. This means that he could still be allergic to one of the things he was tested for and it's just not showing, or it could be evolving. Also, if he's just intolerant but not allergic, which will still show up in his dermatitis, it may also not show in the test. So basically I feel like this test was for nothing. Especially because I keep telling the doctors that I suspect him being allergic to something that is used to process food, not a specific food. Reason for our suspicion is that his skin cleared up while we were in Germany where the foods are not as processed as they are here in the US, but flared up again when we went to Spain. There, the foods are processed almost the same way as they are here. So it could be a dye, flavor enhancer or something to make the foods last longer. Therefore doing an elimination diet is not an option. We're currently checking if the med group on base can do a blood test for those things.

As you can see I have gotten most of my checklist done but I still have the most hardest one ahead, convincing Isaiah's ped to do an EEG and possibly and MRI. Of course we'd prefer for him to not undergo sedation at his age, which is the only way a child his age will hold still for the durance of the MRI. At the same time, we'd rather have him undergo sedation and find an answer so we can intervene than not do it and miss something crucial. And invisible seizures are nothing I would take lightly! Isaiah's appointment is next month so be on the lookout for news on this!

I do have more to report but for now I will let you process what you just read, I think it's enough to handle. So thank you for following us!

Love,

The long promised news - the not so bright side of the military life

Good morning y'all!

Remember a while back I mentioned some good and not so good news? The good news was the job I got....well, I can now share the not so good news with you. We just dropped off daddy at the airport and said bye as he left for his deployment, as did his sister by the way. It is our first deployment as a family. The last one happened right after Joseph and I had met so it was an entirely different situation. We weren't even dating yet so I had my life and he had his, so things were pretty simple as far as any legal issues were concerned. But more importantly, we didn't have kids that needed to be prepared and could cry for their daddy.

Excuse the fake smiles but it wasn't exactly a moment of joy....

Over the past couple of weeks we noticed the kids behavior changed, they were more sensitive, whiny, clingy and defiant. We tried to explain to Nia that daddy would leave for work for some time, however, she's still too young to fully understand. And Isaiah had no clue what's going on, but he could definitely sense a big change was about to come. It always amazes me how sensitive kids are to any changes, even without you saying a thing, they know something's going on. As the date got closer, Joseph got more tense. When he deals with something, he draws back and needs alone time. While I'm capable of understanding that, the kids just wanted to spend time with him. There were times where it was hard for him to be the happy, entertaining daddy, they wanted him to be. In addition, May always seems to be one of the busiest months so that didn't really help with having enough family time. I don't think there's ever enough family time before a deployment though.

We're certainly grateful that we don't have to worry about his safety as much as some other families do. But that doesn't make the separation any easier. He will miss birthdays, our anniversary and holidays. What bothers him even more, he will miss some of Isaiah's milestones. Joseph is pretty involved, always has been, so he wants to be a part of those moments when our kids achieve new things. Especially since Isaiah has to work twice as hard to achieve some of those milestones. At the same time, I will have to deal with these two monkeys (that are quite a handful: terrible tows and tantrum threes!!!) and we all know things that never happen when they're home will happen while they're gone! Let's face it though, it's part of their job. I knew that before we got married. So in order to keep my sanity (and both kids alive) we will try to stay busy, which shouldn't be a problem thanks to Pinterest and some of my family visiting! And of course we'll post plenty of pictures of the things we do! Our first project will be a daddy wall, to help Nia get the concept of the time difference and distance. So let me get some coffee and take a shower so we can tackle the day. 3:30 am was way too early for me to start my day, especially after barely getting any sleep....

Thanks for following! Love,