Magazines

I love magazines. Do I ever have the time to read them? Not really. I usually know that I need to read one of my magazines when the next month's comes in the mail. I like magazines because they can be a short time commitment in my hectic life. I can just pick it up at 9pm and be done by 10pm... and feel like I had some relaxing moments therein.

Recently, I secured some really great deals on a couple, and I thought I'd share.

Real Simple - ALL time favorite magazine. I look forward to it every month. I'd have to say my favorite section is the "new uses for old things" section. Who knew that slices of a wine cork could cushion hard slamming cupboards? Well, last time I had a subscription for this magazine, it was decently expensive... like maybe $40 for two years? I have been hounded by them for the last 2 months regarding my pending end of the subscription and just haven't been able to come to grips with the prices they were offering. I was holding out for a better deal... that was until I got my thrifty and chic mom email alert. Magazines were being sold on amazon for $5 a subscription... so i checked it out. Sure enough, one year to Real Simple was $5. I thought... good price. I'll take that.

Food - or maybe its actually called Everyday Food... either way, its that little Martha Stewart Food magazine that you sometimes see at the checkout desk. I originally got this magazine as soon as I had my own apartment and was cooking on my own... 3-4 years ago. It was a steal as it was FREE with my purchase of hefty bags. I couldn't resist that, and fell in love the magazine every month. My one year free trial finally ended, and I just forgot to look into ordering another year... maybe I held out too long for a good price ;oP Either way, it disappeared and I have missed it. THEN... I discovered My Coke Rewards. If you drink coke, and don't know about this... immediately google it. I love it. Many of you probably know about my very unhealthy obsession with Diet Coke, and know how much of it I go through. I kept seeing the points blurb and ignoring it... I finally logged in one day and deposited my code to redeem some points. What a great decision! I only 2 months I had enough points for another free one year subscription to Food. I redeemed it, and got my first issue this month :o)

Yay for awesome deals :o)

Happy Happy Monday!

What a happy monday it has been!!!!

We have found a new pediatrician! It happened so fast and it was awesome. Let me tell you about it...

A good friend of mine made a recommendation for us. She said this doctor was just awesome! I mentioned the name to Darby's OT and she said she's heard amazing things about him. She (and my friend) also knew that he hardly EVER takes new patients. His schedule is usually full. I decided to call anyways and I prayed SO hard while I was on hold! I got an operator and she said that his panel was open! He was taking new patients!! AHHH so excited. Then we had to wait for a call from his nurse, to just confirm why we were transferring... was it a second opinion, was our primary doctor going on vacation, etc. I told her we wanted a permanent switch and that we'd like to speak with this doctor. She spoke with the doctor and he said he'd like to talk to us too! So next week, after turkey holidays are over, we have a consult appointment! We're thrilled. After hearing how wonderful his office is, I just can't wait to get this relationship started! I already have the "darby fact sheet" all planned out and I'll make it and take it to his office so that he can see darby's history at a quick glance, his current status, his problems that are needing to be addressed, our issues from where we were, and our hopes for what darby is going to do/need in the future. YAY!

Its amazing how this all worked out. Truly. In speaking with another mom, I heard that she has been trying to get her son to be a patient of his since February! Crazy! She said she's called once a month since then to see if he's accepting new patients, and she just got her appt. for her son too! This was God's timing perfectly. I'm actually kind of surprised at how God also uses our desires to NOT do something... because it wasn't until last week that I wanted to change our pediatrician. Before then, I was very content, and then the contentment turned into an educated concern... the educated concern then turned into a definite decision. Perfect. If i had wanted to change earlier? Who knows where'd we be? Would I have just found a new doctor and settled for him? Who knows! But this is perfect!

Onto other happy Monday things... Darby has been saying 'mama' for the last 24 hrs, and won't stop. It cracks me up and I LOVE it.

He can now 'give kisses'. Love that too.

Hmmm we're going to have dinner with Amber and Jake tomorrow. Thats also fantastic.

Sigh... I finally feel like I can calm down a bit. I've been going crazy ALL day waiting for the phone calls for that Doctor's office. I'm SO glad thats over.

... now the dreaded 'break up' with our old doctor. Have you seen those State Farm (or something) car insurance commercials? Breaking up is hard to do? I wish I could get that with doctors... could they break up with the old doctor for me? ;o) i wish.

We're still on hold for Darby's therapy too. I haven't heard from the old pediatrician since last friday and we don't get to see the new one until next week. So its a horrible limbo for who is in charge of getting this therapy under way... but its going to get done somehow! :o)

Done any black friday research yet? Its going to be great :o) ... now onto life again. See ya!

Saturday Stuff

Is it still Saturday? Well, at the time that i start writing this blog entry, it is! We'll see what time it is when I'm done.

Its amazing how a 'free' weekend, with no plans, can somehow make itself packed. It started with my sleeping in (sigh, i love my husband :o), probably helps that football is on early in the morning!), then I rushed to Beverly's for their 'beat the clock' sale that ended at noon. From there I got a call from a friend and went to meet her for lunch and a soccer game! That was pretty awesome. It was so good to catch up with her, since I hadn't seen her in forever. Also, the soccer game was a ton of fun. I'd love to see the next one in the championship!

When I got home, Darb had just gone down for a nap and Jason needed to leave to go to a concert. I was able to get a couple things done and get ready to go out, again! I really wanted to go to target! Unfortunately, Target left me empty handed... well not quite, I did get myself a milk chocolate 'whack-an-orange'. YUM. First of the season! But the 2 things I did go for, were not there :o(

But I've washed my fabrics from Beverly's and have been ironing them and catching up on my DVR shows. I'm VERY excited to have finally figured out what I want to do for my Christmas craft gift. I have almost all the supplies and have started on trying to make the pattern for it... I might need to rearrange my ideas a little as my patterns aren't panning out the way I'd like them to.

I DID buy some Amy Butler fabrics today... they are SO gorgeous! My only problem is that they are TOO pretty! I don't know what I want to do with them because I'm too scared to cut into them. I got the very last of both fabrics, just taking what was left on the roll... about 1 yard of each. I probably should have an exact project in mind when I buy fabric... instead of the other way around. Sometimes I really wish I was a better seamstress and designer... but I guess thats why i need to practice!

It's been a nice day, to just spend doing whatever I wanted to do. Yesterday was a very stressful day! We're still working on getting Darby's therapy worked out. I heard news about it maybe working out late on thursday night... so I had high hopes on friday... then friday I had an argument with our doctor and it just dashed my hopes. I'm trying not to be scared as I just feel so helpless in this situation. God is going to take care of all of it and we are going to be amazed when He shows us what He was doing.

With that being said, we still ask for your prayers... and now I'm even asking for recommendations on pediatricians! :0/ Since we'll be changing probably asap.

I better go, its getting late... 12:36 am.

Getting to Know Darby

I was thinking today about how many people don't quite understand Darby, and I thought, "well I should tell them!" Darby is a funny kid and very well loved. So I think I will share some things about him, that maybe you'd be interested in... maybe not!

Darby @1 year

Darby has weighed around 20lbs for over 6 months now! He was getting heavy at 4 months, then the steroid treatment made him even more hungry... he was at 20lbs 4 oz around 7-8 months. Since then he is struggling to keep his weight. We started with the medication that suppresses his appetite at 4/5 months... so he has really stayed the same weight since then, and just gets longer. We have dipped to 19lbs 4oz and are now back to 19lbs 12 oz... so we're working on it!

He's about 29.5 inches long.

His hair as almost all grown back from his surgeries. However, he looks like he has a faux-hawk because of his two scars on each side of the hairline... hair has barely grown back in those spots, so it makes it look plentiful in the front middle.

He is over a year old now, he is still on formula, and still using a bottle.

As with all Darby's skills, he is definitely behind. I'll go into what he can do, before what he can't.

Darby Can...
-Sit up on his own! No boppy needed, but sometimes its still good to have around for when he's being crazy!
-Sleeps through the night.
-Is eating baby food... up to Stage 3. We haven't tried all Stage 3 yet, but we are progressing to get there.
-Roll over! He is rolling around, but not necessarily rolling numerous times to get to a certain place. He hasn't quite grasped that.
-Able to spend more time on his tummy, playing.
-Can bear a small amount of weight on his arms (leaning to reach toys)
-Can throw things!!! and boy can he throw things...
-Says Mama
-JUST this week he has started to pick up little puffs from his high chair and has started placing them in his mouth. He very often gags, vomits, and then continues to try again... but hey, thats progress!
-Passes toys from one hand to the other.
-Dances :o)


What Darb can't quite do yet....
-He has NO teeth. You don't want to get me started about this... I'm starting to doubt their existence. But the drool and crankiness keeps me guessing that they are really coming out. I blame Jason, its his gene pool that has late blooming teeth ;o)

-Darby can't stand. We're working on it, and he's going to be able to. He's just not able to bear weight on his legs quite yet. There are a lot of reasons why he might not be able to... first of all, babies are born with a reflex to stand that kicks in very early in infancy... but Darby missed that part of his infancy. He only had 2 weeks of life before his 1.5 week coma, and then 2-3 months of phenobarbital medication that kept him sleeping all the time. He kind of missed out on that time. Secondly, Darb just doesn't understand the concept of standing/he's scared of standing. We're not 100% sure darby's sense of balance and his 'center' is really the middle. He kind of likes being a little bit off and leaning to the left... but we just got him an exersaucer to start promoting getting his feet down, and flat... getting him in a standing position. There is A LOT of hope that he's going to stand and one day walk. We really don't doubt that. Its just going to take A LOT of time. He might not be walking till 2 or 3 years old. And thats okay with us!

-Darb can't crawl. Kind of a given considering his lack of arm muscle... but we are working on it!

- Darb can't eat a lot of solids. Thats something we are working on too. Its hard to teach a child to eat 'adult' solid foods, when he doesn't even have an appetite for eating his own normal baby food. So this too is something we work on and let him go at his own pace. But I've learned to just keep giving him options and one day he's going to act on it. Just like he did this week with little puffs!

-Darby can't be around magnets. A lot of you guys know this, but I like to reiterate it. Toys that contain magnets are a definite no, as they can adjust his shunt. So we have to keep a close eye on him when we go to the nursery at church or to a friends house... just to make sure the toys he grabs at and the toys that the other children give him, don't have magnets in them. Magnetic toys seem to be all the rage right now, so thats sort of nerve racking!


Now for Darby's reports...

We get evaluations done at his one year mark for his therapies. I don't have all the results, as his therapists are purposefully dragging their feet, so Darby can keep his therapy as long as possible! But I have a rough idea of what the results will be and I do have his physical therapy results.

Darby's Gross motor skills - 5 month old level
Darby's Fine motor skills- 5 month old level
Darby's cognitive/social skills- 8-10 month old level

Then within those there are different levels. Darby is going to be scored a little differently for his fine motor skills, as his OT feels that his left side and right side are at different skill levels. And under cognitive and social skills, he actually scored at 12 months on one of the subjects! That was pretty awesome.

We're starting to work harder on his skills as he is showing us that he can understand more. Can I just say, there is SOOOO much that you have to teach your child? I think I'm doing a good job of remembering to do this, this, and that, and then I remember or realize that I need to also be working on this thing and the other... goodness! I've resorted to a checklist! Vitamins, check! Solid foods, check! Tummy time, check! Physical therapy work, check! Standing, check! But really, there is barely a day that I can remember to do it all!

So... now what?
Thats Darby for you. He is honestly the sweetest and most joyous baby! I can't even explain to you how happy he is sometimes! He seems to be in a phase where he is just so happy to play and content in what he's doing. Probably his most favorite thing?! To have Jason and I in the same room as him, and with him. He looks at me, and then he looks at Jason, and then he gets this giggly smile. Just melts our heart! He brings us so much joy by showing us how joyful he is.

I hope I gave you a better glimpse at Darby and a better understanding of how he is doing!

One Year Ago Today

Dear Jason,
One year ago today, our lives changed dramatically. I think they changed more that day than two weeks before when we were given a child.
We went through so many emotions that day:
frustration, thinking that this screaming child had colic and how horrible it just might be to have a newborn!...
to confusion, as we didn't know what was really going on with darby...
to apprehension, as we went to urgent care and the ER, and hated being in those rooms with our newborn and all those sick people! ha!...
to absolutely paralyzing fear and relief and grief all rolled into one, as we were told that they found blood on Darby's brain... and that was all they could tell us. I remember not knowing what was going to happen, or what was going on... you handed Darby to me, as he slept, because you wanted me to hold him.
For all we knew, we only had hours left with our son. We were so scared and yet we chose in that moment, to just trust God with our Son and with his life. You were a constant support for me. I knew that if the worst were to happen, I wouldn't be alone, because you were there with me. I had never felt so close with you as I did in that moment, sitting as a family, tears flowing, and clinging on to hope. There was such amazing peace given to me at that moment.
That day, we lost that fuzzy outline that most parents are given when their child is born... who knows what Darby is going to be able to do, or not do, what else is in store for him. Only God knows. But I'm glad you're Darby's Daddy, who is going to stick by him, and me, no matter what.

I wanted to post these pictures for both us to remember, and for everyone else. Its hard to look at them sometimes, but its truly the best way that i remember how far God has brought us.

And look at him now!

Happy 1st year miracle anniversary honey!

Love, dana

Prayer for Therapy

Hey friends! It has been an insane weekend for sure! Darby's party was on Saturday, and I've been non-stop since then. I've been so busy and flighty, that I actually completely forgot about a make-up therapy session we had planned for today! I was shocked when his therapist came to our door... it all rushed back into my head and I ran and woke darby up from his nap... oops! It ended up working out just fine :o)

Some of you have heard about our dilemma, but its such a new dilemma, that I haven't been able to tell everyone. Its hard to explain, but I'll try my best...

Darby gets his physical and occupational therapy from a center that specializes in children with long term care and special needs, and even has therapists who specialize in infants. This place gets its funding solely from Regional Center, a federally funded center that helps children with disabilities get help that they need. There are so many kids that go to Regional center, that his therapy center doesn't even take insurance! There is even a waiting list to get therapy! Anywho, so thats the base of the pyramid...

California is in a budget crisis. Its stupid and ridiculous and I try not to get too worked up about it... SO because CA has no money, they cut millions of dollars of funding to the first start childrens programs... including Regional Center's funding. This caused Regional Centers everywhere to start cutting their budgets. At first, they were just making it ridiculously hard for people to get started in the program of funded therapy... then they cut respite care and other features... then they decided that all children who were 'high risk' were to be evaluated and if they had a disability of less than 33%, their funding would be cut.... All of these things were not great. Lots of kids are now without funding and without therapy. That alone broke my heart. But we also thought that we were safe and we just got by those cuts.

Then thursday came... last week. The owner of his therapy center came to me and told me some bad news. At each child's annual review with Regional Center (when they turn 1 yr old, etc), the parents are going to be required to show proof of insurance. If we can show that we have medical insurance that would cover darby's physical and occupational therapy, no matter where that may be, then they would be cutting our funding. The owner herself was shocked at this phone call she had just received today with this news and said we'd be the first family having to go through this, since darby's birthday was the first week of November.

One might think, oh well, not a big deal, considering we have great insurance! Right!? Well, no. Thats almost the problem! Infant type therapy is very hard to find. The places that insurance will send us to (and did send us to in the past, before Regional Center) can't handle long term special needs infants. They deal more with sprains and broken bones, and getting back to work! Infant specialists are just not found through insurance... for whatever reason.

So we are attempting to do everything that we can. There is no precedent, so all things are potentially fair game. Doctors letters, therapists letters, anything that might help us plead our case to Regional Center, we are working hard to get. I have found one legal loophole that will give us 1-2 months of therapy, paid, if we get to the point of a full blown denial of funding. We have also spoke with our pediatrician, who is so shocked that this is happening. He was upset to hear about that, since he said, "All children with special needs we have refereed to Regional Center, there aren't other options". He has spoken with our insurance and has started the referral game. We'll see where they would send us, and if its not adequate for Darby, that can be another plea we can use against Regional Center. We've priced private therapists, and looked into other centers... but they are expensive and darby is just still too young.

Darby's therapy center is absolutely scrambling to make contracts with insurance centers so they can still get children therapy, but its going to take time... and they haven't been able to make a deal with our insurance, so we are working on a possible private contract with them.

We're praying and we just ask if you might consider doing the same. None of this caught God off guard, although it caught us. Darby's needs will still get met, just maybe not the way we thought they would. I also have the privilege of knowing how to do most of darby's therapy programs with him, and if it comes to it, our therapists will work hard to teach me what I'm going to need to do on my own in the coming months.

What breaks my heart more, is how wide spread this is... hundreds of children... HUNDREDS! Thousands?!?! These children are going to be denied funding, sent somewhere without adequate care (by their insurance), and possibly suffer developmental delays that will now be with them for life. It is so hard to think about how money that was going to help children to crawl, walk, talk, and function in normal society, is now being taken away for other purposes that just seem political.

This funding was a huge blessing, to us and to others. We'll never take it for granted ever again!

Happy Birthday Darby!

Today is Darby's very first birthday! Here is a picture from this morning, after his bath.More to come...