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,

Brushstrokes for Pediatric Stroke

Hey y'all!

So today was our Brushstrokes for Pediatric Stroke event. We had a nice turnout. Some people were sick and pretty bummed about it, for good reason, because we had a blast! Margie from Margie's Art Glass Studio was so generous to provide us with the room at no cost! We just had to cover the tiles we used. If you haven't been there you HAVE to go! They have a ton of ceramics at great prices and it's so much fun. They also offer stained glass classes, and more. And their coffee is the bomb! If you're not into art get some coffee or an Italian soda or a smoothie!! I know we'll be back for sure! Okay, enough raving, let's get to the point, lol.

Thank you Margie for your support!

For Pediatric Stroke survivors daily tasks, such as drawing and painting, can be a bit difficult, due to the hemiplegia (weakness in one side of the body). At the same time, getting them to do those things with their affected hand can be great therapy. We had Isaiah do a hand print with his affected hand, brushing the paint on his hand stimulated it and forced him to open it. Plus, holding a paintbrush helps work on those motor skills! And isn't anything involving paint and getting messy fun? I sure think so! It definitely showed! The kids had lots of fun and it was awesome to see how much effort they put into their tiles. Check it out!

Ellie made an awesome Father's Day gift for her daddy's office!

Nia working hard on her tile.

Artists at work!

Not sure who had more fun, Isaiah or daddy! Rebecca deciding on her design.

Masterpiece in the making.

Her first time painting ceramics!

Isaiah and his girlfriend Ellie.

Masterpieces drying.

By the way, we raised $102 during the event! The money will go to CHASA (the Children's Hemiplegia and Stroke Association) to support research, scholarships and medical equipment. Thank you all who participated! Next year, we're trying to go bigger so be on the lookout ;)

Isaiah says "Thank you!"

That's it from us for now. We're going to enjoy our Memorial Day weekend, the last holiday together before daddy's deployment! So "Happy Memorial Day" from our family to yours!

Love,

We're streaking!

....nooooo, not what you're thinking! We're NOT running around naked, I promise! We're doing things every day to help raise awareness for Pediatric Stroke! If you've read my last post, you may have an idea of what I'm talking about.

We were able to recruit 2 businesses for Pennies for Pediatric Stroke this year, with one possibly following next month! Soooo, why don't you go grab some coffee or tea at Beaver Brew Cafe and get your lunch/dinner at KFC on N Broadway, thanks guys for supporting our great cause! If you're not in the area but would like to make a contribution, you have the option to go to Isaiah's fundraising page. Just click on the widget in the upper left corner. We're also busy selling awareness buttons! If you  haven't gotten yours yet but would like one, contact me and we'll get one to you. They're $1.50 with 100% of the proceeds going directly to CHASA (The Children's Hemiplegia and Stroke Association).

The "Pennies for Pediatric Stroke" jars

As every year, we've decorated our yard purple. If you remember last year's post I went crazy and did a window mural, took me half the day, and only because I had help. It also took half the day to take off. So a better solution had to be found! A banner!!! We haven't hung it yet, shame on us, which actually turned out to be a wise choice, as we had a storm here two nights ago. We also got some pretty purple flowers, our pinwheels from last year, and Nia picked out a purple butterfly. Not to mention, our purple wreath, although I may retire it next year and replace it with a bigger one. This is how it looks:

Living on base, we're a bit limited as to what we can put in the yard, I really wanted to spray paint the lawn but a) we had snow on the ground til 2 weeks ago, and b) military regulations.... oh well, one day! Here are some close-ups of the flowers and the butterfly:

I actually had to bring the flowers in over night the first couple of days as it was still too cold at night.

Some of you may know that each year we write a petition to the governor, asking to proclaim May as Pediatric Stroke Awareness Month. Well, here is this year's petition! Again, thank you Governor Jack Dalrymple for issuing the proclamation!

 

Another thing we do is wear purple, in all kinds of ways! We try to walk as much as possible across base while sporting our purple, too:

My girls Stacey and Tracy rocking the purple while walking for Pediatric Stroke Awareness!

Sporting my purple, including eyeshadow, while running errands, hence the not so happy face. I don't like waiting forever, lol.

See, purple eyeshadow.

My purple workout gear, I'm NOT bikini ready so I wear a top over that sports bra top!

So, as you can see, we have a bit going on. Next Saturday we will be doing the "Brushstrokes for Pediatric Stroke" event at Margie's Art Glass Studio, I have 3-4 slots left so contact me asap if you and your kids want to come! The walkathon we had planned is canceled as of now. We have too much going on right now, soon you'll know what I'm talking about, so unless something changes last minute, there will be no walkathon. I will try to take lots of pictures at the event next week. Let's see how that'll work between painting tiles and making sure the paint stays on the tiles and not on the walls, ha!

So much for my update, my lovely friends. I will now get back to my exciting - not - household chores and packing, as we'll be leaving to Fargo on Monday! Ahhh, I just realized, I also still need a dress for tomorrow's wedding!!!! What! Alright, gotta go!

Love,

Get your streak on!!!

Hey y'all!!!

While the majority of you are probably enjoying going coat-less and getting some sunshine, we are still sitting in snow here in the frozen tundra. Well, I should say, again; spring made a rather short appearance, the snow melted, we could finally see grass and I dared to go outside in a shirt at beautiful 45 degree weather (yeah, that's spring for us. Sad, I know). All to get a "just kidding" from Mother Nature, as she sent us an April blizzard!!! Needless to say, we're not speaking to each other right now! She has until the end of this month to get her act together! I need May to be warm and sunny!

As y'all probably know by now, May is Pediatric Stroke Awareness Month and I'm planning on walking every day, wearing my awareness gear! Some of you may remember me mentioning a "Brushstrokes for Pediatric Stroke" Awareness event I was planning. Well.......it is a done deal! The lovely Margie from Margie's Art Glass Studio has agreed to help us raise awareness and some money for Pediatric Stroke! Every child (or child at heart) gets to paint their own 6" tile for a $15 donation. I am so excited!The event will be on Saturday, May 25, at 10:30 am. So if you haven't seen my Facebook event yet, shoot me an e-mail cause spots are filling quickly!!! Oh, and while you're at it, go over to Margie's Facebook page and show her some love by liking her page!

We're also working on a walkathon, possibly on base. The buttons I ordered should be getting here soon! They will be $1.50/each. Get your order in before they're gone!!! I still need a lot of things though. I need shirts but haven't found a good enough deal yet. I also have to provide water for the walkers and we're planning on doing a food sale too. Not to mention the activities for the kids and prizes. Eeek! I might have to do some convincing so Joseph will let me order everything, lol. So, if you know a business that is just itching to help with either donation or participating in a fundraiser shoot me a message!

Hopefully, we'll hear back from the governor soon about our proclamation for this year! I will keep you posted on the outcomes but for now, I will return to my hunt for spring!

Love,

Wanted: Motivation and Spring

Hey y'all!!!

How was everyone's weekend? Here in Minot we are still covered in snow, as a matter of fact we got another 3-4 inches over the past 2 days. Like we need more snow! Needless to say it's hard to get in the mood for spring and Easter. I haven't even started decorating for Easter yet! It's this week! I also still need gifts for the kids. Usually we do an Easter brunch the Saturday before but this year we won't. Nia's friend is having her birthday party that day and honestly, I haven't been very focused on my domestic duties lately, lol. I tend to have one really productive day where I have the motivation to clean and organize and if someone doesn't stop me, even rearrange. And then that's it for at least a week. I don't know, my motivation must have left with the birds when winter came... At least getting my new vacuum cleaner helped a little. I get excited when I get new gadgets for the house. Yes, I even get excited about a vacuum cleaner! But no worries, it doesn't take long before it becomes a chore again and I'm like "meh".

However, I have been REALLY motivated about my little job! I say little cause it's just 8 hours a week, although I spend more hours on it, brainstorming, researching, etc. I just got done with my online training for the ND Parent to Parent Program. This program was designed for "new" parents of a child with a disability to find support from support parents of a child with the same disability. The new parent can contact the P2P coordinator and they will match them with a support parent who then reaches out to the new parents. I seriously wish I had known about this program when we first found out about Isaiah's stroke. Thankfully, I found CHASA shortly after but having a parent from the same state to talk to would have been helpful. The preparations for the NICU family support group are in full swing too! We're working on a support group for parents (and family) of babies who are in the NICU. From our own experience in the NICU we've learned that it really makes a difference if you have someone to talk to, to ask questions, who has been in your shoes. We've seen so many parents struggle to talk to their babies, struggle to touch or hold them. It's not easy, you dream of that perfect birth experience (really, there's no such thing, unless you think excruciating pain is perfect!!!) and the perfect baby. Seeing your baby hooked up to all those cables and machines cna be so devastating! I remember my husband was so scared to hold Nia because he was afraid to break her, tiny as she was. With Isaiah it was an entirely different scenario. With him being on medication, there was little to no response from him and for some time we were not allowed to hold him and could only touch him with protective gear. As weird as it sounds, I thank God for the experience we had with Nia. It somewhat prepared us for Isaiah's time in the NICU. Obviously, we had different worries this time but we knew how important it is to touch and talk to your child.

For a first time parent in the NICU, this is much harder. Many feel left alone in coping with the situation. Yes, there are the NICU nurses but they're taking care of the babies. If the NICU is full they may not have as much time to talk to you about how you feel, they have to focus all their attention on the babies. For some parents this is frustrating but that is the NICU nurse's job. To take care of those precious babies. Other parents just find it hard to talk to doctors and nurses. They may feel silly for asking certain questions, some feel intimidated or feel like they won't understand. Sometimes it's just easier to talk to another parent just like you. Someone who has been through it, someone who won't think you're silly for asking a million questions. Someone, who has shared your worries, your fears, your guilt. That's what this support group is for. In addition, it will provide you with helpful information about services, programs, etc. When your child is taken to the NICU, a lot of the information brochures the hospital staff hands you don't get looked at, the things they tell you that don't pertain directly to your child's health go in one ear and out the other. Your one and only focus is your child's health, everything else becomes secondary. Parents don't necessarily have to come to this group right from the start. They can come whenever they're ready. Some topics may not be interesting for them then since we'll talk about becoming a parent in the NICU, how to care for your baby while s/he is in the NICU and how to cope with going home before baby amongst other things. Honestly, that was one of the hardest things for me! "Leaving" Isaiah, with Nia I was in the hospital til we brought her home. They gave me a room and I saw her every 2 hours (also cause I had to nurse every 2 hours). I remember the staff telling me it's ok if we want to go have dinner and spent some time together, Joseph and I. That was impossible to me! She was there for only a week and the hospital had rooms available at the time. With Isaiah, I felt so guilty for leaving him, once home, I didn't want to do anything but prepare for when I went back to the NICU to see him. I knew he was in good hands but as a parent you can't help but feel somewhat guilty because you feel it is YOUR job and not somebody else's to take care of your child. But there was no way I could've stayed at the hospital and this time we had Nia, who we had to care for as well.

I seriously hope I will be of help to the parents and the families. This is a huge responsibility so while I'm excited I'm also nervous. Next week will be the first time I'll be talking to the parents, eek! I have a lot to do til then!!! By the way, this week will also be Isaiah's speech evaluation. I know he'll be fine but I still want to find out why he out of a sudden stopped saying the words he's been saying for 2 months! As a mom, I can't help but worry about him. It's not that I don't trust that God is in control, He's shown me more than once that He is, but it's just part of the life of a parent. Let's hope it's nothing and I'm wrong, lol.

Back to Easter, what are y'alls plans? Have you decorated yet? Hopefully, I'll get that done tomorrow! I'll have both kids home since Nia has a cold. Wish me luck!!! I'll post pictures when I'm done, if I get done that is!!! Alright, I meant to write more since it's been a while AGAIN, I KNOW, but I'm T.I.R.E.D!!! So I'll force put my sick little diva in bed and hit the sheets myself. Oh, before I forget, shoot me a message if you or your boss or a business you know wants to be part of this year's Pennies for Pediatric Stroke! We'll soooooo appreciate it!!!

Love,

Riding on a roller coaster

Hey friends,

How have you all been? I know I've been MIA for a little bit. There are some great and not so great changes. The not so great changes are about Isaiah. While he's been doing awesome running around (with a few falls here and there) he has now started to put the weight on the inside of his right foot, therefore having a flat foot. He has also started to somewhat drag his right foot a little. The flat foot we intend to fix with an arch cookie. Tomorrow I need to call to have them custom made. I'm not sure what to do about him dragging his foot....hopefully this month's PT consult can shed a light on it. My bigger concern however is Isaiah's speech. I feel like he's been regressing. He used to say quite a couple of words by himself without me having to say them first. Milk, mama and daddy were some of them. Now he will either repeat them or not say them at all. Milk he won't say at all. We caught him say and sign please Friday night at a friend's house but that's the only time so far he's said it. He will however, say the word heiss, German for hot, because Nia says it all the time. My hope is that he's just going through a phase but my biggest fear is that he may have had a seizure we didn't catch that caused this, or worse, a mini stroke. Sometimes the signs of a seizure are not evident if it's not one of those with jerking movements, etc. And since he is still so young the signs of him having a stroke may be different than in an adult. He can't talk well enough yet to let me know if his head is hurting or if he's having a weird feeling in his arm for instance. I highly doubt it's the latter but we do live with that fear every day. Fact is, once you've had a stroke, there's a possibility you might have another at some point. My grandmother had several mini strokes that almost went unnoticed. I don't know how I'd feel if I didn't notice Isaiah having one! Anyway. We've asked for a speech consult with IDP to see what's going on and hopefully it's nothing.

Now to the great news! Minot's Infant Development Program offered me the position of the Experienced Parent Specialist - quite a tongue twister huh! Say it fast 5 times! Lol. So here's what I do in a nutshell: I talk to families whose kids are enrolled in IDP and answer questions they might have about the program or where to find information and support. I meet with parents of babies who are in the NICU and talk to them in a group setting about certain topics and individually if they like. I also write a quarterly newsletter called "Side by Side" and host a monthly playgroup. The playgroup I still need to figure out where to do, living on base makes that part a bit difficult. Well, and this weather....ah, spring, how I long for you! Basically, I am emotional, mental and informational support where possible and needed. I don't consider myself experienced in this area at all, we've only had 17 months on this roller coaster but I do know a thing or two about the worries, the feelings of sadness, guilt, hope and helplessness. So I hope I can be of good use to the program and the parents.

As you guys know, I try to do fundraisers here and there to raise money for CHASA and awareness for Pediatric Stroke. The cookie auction, Pennies for Pediatric Stroke and Isaiah's birthday party fundraiser were a great success. This year I will be doing some of them again. The Pennies for Pediatric Stroke is in the works along with some other things, which will be announced once they're set in stone. As always, you can make a donation to Isaiah's fundraising page at any time! Just click on the widget in the top left corner ;)

I would love to do a silent auction this year so if you're a business owner and would like to donate an item, feel free to contact me. For the ones who are local, we may be doing a base wide fundraiser where this might be a part of the event. If we get base approval that is. If not, I will host the auction on this blog. You may also know that I write petition each year to the governor to announce May Pediatric Stroke Awareness Month, wish me luck that this will go smoother this year, lol.

Well, that's it for now. As usual, thanks for following my humble blog!
Love,

January ipsy glambag review

Well hello my loves!

As y'all know, most of the things I do are about the kids and for the kids. When I talked to one of my lovely friends in October last year, she mentioned the ipsy glambag. It is a collectible beauty bag filled with 4-5 beauty products, many of which come in full size!!! You can subscribe to it monthly for only $10 with free shipping. I received my first bag in December but forgot to do a review on it (shame on me!!!). LOVED EVERY SINGLE ITEM!!!!!

This month's glambag looked like this:

- Pacifica Tuscan Blood Orange Body Butter
- Nailtini nail polish in Bloody Mary
- Big Sexy Hair spray & play hair spray
- Josie Maran Argan oil
- SOHO concealer brush

The Pacifica body butter smells so fresh and summery (awesome distraction from these cold temps we've been having! Can you say -50 degrees?!) and it leaves my skin nice and soft. Being in ND I need something that moisturizes my skin VERY well. It's insane how dry it gets during the winter! And this body butter certainly does it! Go check out their products! Their made of natural ingredients without parabens, sulfates, animal testing, etc. I so want to try their coconut water cleansing wipes (amongst other things!!).

While I may not like to drink Bloody Marys I certainly LOVE it on my nails!!!! Not only is the color stunning, I technically would have only needed one coat, that's how great this Nailtini nail lacquer is and it dried super fast! Isaiah seems to be fascinated with my toes right now, especially when painted and I was worried he'd mess it all up when he touched them not quite so gently - and with that I mean he scratched them - shortly after I applied the first coat. But it was already completely dry! That's what I'm talking about! I usually do my nails during nap time thinking it'll give them enough time to dry. Uhm, nope! It's like he knows I'm painting my nails and just waits for the moment when they're all painted to wake up! Here's whats even awesomer (yeah, I made that up!): You can mix your own cocktail aka nail lacquer! How fun! And not just nail lacquers, lip gloss and eye shadows too!!!! Oh my word! Go here to find out how: tini bar

Big? Sexy? You can say that again! Big Sexy Hair spray & play hair spray does what it promises! It gives great hold without making my hair too stiff. I like it when my hair has hold but is still flexible. I mean, who wants to look like they're wearing a hair helmet? I love that it's sulfate free. It's also gluten free for those that are allergic to gluten. I can only imagine how big and sexy my hair would be if I used the shampoo and conditioner in combination with the mousse, gel or spray!!!

The Josie Maran 100% Argan oil is one of the most versatile products I've ever tried! The glambag came with the to-go size ($14 value so you see you get more than your money's worth!) Here's the argan oil society's list of some of the benefits of argan oil: benefits of argan oil
I didn't know I could use it in food too!!! Anyway. Here's why I was excited about it: Isaiah, as you know, has atopic dermatitis so while his skin needs moisture I can't use most of the products out there. Argan oil not only moisturizes the skin it also helps skin heal! One of the benefits for me is that it balances sebum production to help fight acne while still moisturizing the skin. For some reason my body has decided to act like it's 13 and so I've been having mild acne lately (funny thing is, only my skin acts like it's 13, smh). My doctor prescribed me retinae cream which dries out my skin, however I can apply argan oil and it keeps my skin from drying out and doesn't clog my pores! LOVE! I can already tell a difference and I've been using it for almost 10 days now. I'm seriously thinking about getting the concealer, also with argan oil!

The SOHO concealer brush is a skinny flat-edged brush so it works really well on that sensitive skin under the eyes, but also in the creases of your nose and to blend concealer into your skin when trying to cover up blemishes. I have a bigger one that I use for bigger areas but this one is perfect for when my skin has cleared up some more. SOHO makes a variety of brushes, make up bags, make up cases and beauty organizers. What's great is you can get them at Walmart, Target, Walgreens, CVS and HARMON so even I can get them at a store and don't have to wait til my order comes in :)

So, that's it for my glambag review. As you can see this subscription is a steal at $10/month! And every bag comes with coupons you can use for the featured companies! If you want to join ipsy and get in on the glambag love, you can go HERE to sign up!

Love,

Frotastic Curls

Hey hey!!!

As y'all have probably noticed, my kids have hair, A LOT OF IT! Not only do they have a ton of hair, because they're biracial their hair is quite different from mine. But if that wasn't enough of a challenge, Nia's hair is different than Isaiah's AND their hair changes texture over time!!!!

Here's Nia at 3 months:

 Her hair is straight!!!!! It only curled when wet, so momma put that lotion in! Oh, and how mad I would get when  we took her hats off and it was all nappy again....

Then at 6 months:
More curls but again, only with some hair product. I used Soft&Precious back then.

When she was 1 she started to have soft curls that got a bit tighter with time:

She's about 20 months here.

And now that she's 3 - ba-baam! Yeah, she doesn't wake up with cute little curls, sorry I have to break it to ya!

This is what I deal with every morning (Mind you, this is AFTER I detangled her hair)!!! Cotton candy craziness!! Someone doesn't want to keep braids in or a night cap on! Well, I don't blame her, her curls are gorgeous when tamed, haha, and at that age I wouldn't want to keep a cap on at night either! So I got her a satin pillowcase (cotton draws out the moisture in her hair and it doesn't produce oil like my hair does) which should keep those tangles to a minimum.

Now to Isaiah. See those curls? I didn't have to do anything, they just happened!  Back then he had a cute little fro-hawk, by nature by the way, though people kept asking me if I cut his hair like that. Uhm, yeah, I totally cut my 6 month's old hair into a fro-hawk.....NOT! Moving on.

Now we have encountered this:

Slight hair explosion! His curls are much tighter then Nia's were at that age so I have a feeling we're looking at a future afro!!! I say this with excitement and fear all at the same time! It'll look amazing BUT it'll be work, since he's a boy, it'll be much work. For some reason boys don't seem to care so much about their hair at that age. Anyway. Yes, their hair is more work than mine will ever be and it's not super easy to manage but it's not super hard either. You just need to know what you're doing. In my case that involves some trial and error, have I mentioned error yet? And with their texture changing it also involves a journey through the hair product world til you find what works for their hair at a specific stage.

So over the past 3 years I've used a variety of products, I washed their hair with Johnson's baby shampoo for curly hair and used olive oil when they were babies and the occasional Soft&Precious spray to define those curls. At some point I used Just Me Detangler for Nia and I'm sorry to say it went in the trash rather quickly. Her hair smelled yummy and it worked okay but left her hair very dry after a short time. After that, we moved on to Mixed Silk and Silken Child from Silk Elements. At first I was in love with Silken Child but it soon showed that it too wasn't for Nia's hair, as was Mixed Silk. It's a great product, just not for Nia.

I shall add, we've always had our routine: Wash her hair twice a week, condition it, detangle it and moisturize (with a mixture of oils). Every day we detangle. I try to braid it every so often if she lets me. Nia is VERY proud of her hair, as she should be. She'll flip it and tell the world that her hair is SO AMAZING! Oh yeah, quite the dramatic actress here! Getting side tracked! Sooo, I went back to Sally's as it is the only store with a decent selection for ethnic hair here in Minot. I wanted to try a different detangler, a spray, so I bought Lavish Curls from Curls. LOVE the smell! It's not exactly for children though and I think that might have been the problem. It is more of a moisturizer, not a detangler per se. I read awesome reviews about their kids line Curly Q's for Kids over at Treasures for Tots and Baby Big Hair, however, the stores here don't sell the kids line - insert sad face. So back I went to Sally's AGAIN and checked out a line I considered buying the previous time when I went with the Curls product: Taliah Waajid. She's a mom who's been in the natural hair business since 1996. You can find her products here. I chose her line because it's free of all those chemicals and alcohol that dry out my babies' hair. I could tell the difference after the first use! Her hair was big and had these beautiful but not weighed down curls, even the next morning, way less tangles too! I love the shampoo, The Great Detangler leave-in conditioner and the herbal comb out lotion, the latter is specifically for kids. Again, Sally's carries more of the adult products here, the comb out lotion and the herbal style and shine are the only kids products they carry from her line. I will go more into depth about the different products as well as some new combs and brushes at a later point. This post already is a bit lengthy!  :)

In the meantime, check out Treasures for Tots' tips on biracial hair care and make sure you also hop over to Baby Big Hair for some more tips, they have awesome shirts too!!! I'm going to get some for Nia and Isaiah!!

Til then, love,