Friday, June 29, 2012

Sam and Early Intervention

Over the past year I have received lots of e-mails about Sam and his motor delay. Most emails come from people I don't know who have children who are behind in some areas and just want to know more about our progress. I've had intentions of posting about this but have never gotten around to it because of this or that. I thought it would be helpful if I wrote a post about little Sambo so that it might help answer some questions or just help someone in the same situation.

One of the main questions I've been asked is "Does Sam have a certain diagnosis that caused his motor delay?" so I'll start by saying that Sam had/has benign hypotonia of infancy; in other words, he does not have a diagnosis, but was born with muscle weakness for no apparent reason, so they give him the "diagnosis" of 'benign hypotonia.' We did not know this right when he was born because, well, he wasn't necessarily a 'floppy' baby; he held his head up pretty much on time and generally didn't show the muscle weakness until around 3-4 months; I noticed he would not put weight on his legs and seemed to hate tummy time; not for the reasons that every baby hates tummy time, but because he literally did not have the core strength to even attempt it for more than a few seconds. Around 6 months he was still not putting weight on his legs and could not really sit in an exersaucer for longer than a few minutes without flopping over to one side, even with support (like blankets, etc) around him. And by 6 months babies should definitely have the core strength to do those things.



Now, backing up, when Sam was born he did have a few 'markers,' for lack of a better word,  that would cause doctors to take a second glance at him. For instance, the cranial sutures (or the openings in the bones of his head; the soft spots) were wider than normal. In fact, the main soft spot on the top of his head was not just at the top of his head but came down onto his forehead... hard to explain and hard to see really, but you could feel it and you could see his little pulse just beating away if you looked closely enough. He was also born with undescended testicles; it is fairly common to be born with one testicle that is undescended, but having two that were undescended was a little less common. He had surgery at 6 months and again at one year old to pull them down to where they are supposed to be, and luckily did very well with surgery and has had no complications from that. But the combination of his wide cranial sutures, his undescended testes and later his muscle weakness led doctors to be concerned; any of those things, in and of themselves, would not be of great concern to doctors. But since he had a combination of 3 different things, they made plans for us to see a few specialists just in case.

(Sam learned to sit up at 8.5 months)
The first year of his life was difficult in so many ways for me because of these specialists appointments; it seemed like I was always in a worried state, waiting for the next appointment or waiting for a particular test result to come back. We saw a urologist, neurologist, neurosurgeon, had tons of x-rays and blood work done, and even went to an outpatient physical therapist at first. It was constant, it seemed, and I began to dread Sam's well visits at our pediatrician just because it would always remind me that he wasn't meeting his physical milestones on time, like sitting up or getting on all fours, etc. Finally at his 6 month checkup I asked Dr. A if he would mind if I called Early Intervention Services of Alabama.

I had heard about Early Intervention Services through my good friend Jackie who worked for them at the time and I am so thankful I knew about this service because my pediatrician did not think to tell me about them (he is wonderful by the way and fully agreed to my calling them when I suggested it.) I am so, so thankful for the EI Services of Alabama. You can find out more about it here, but for those that do not know, it is a service provided for kids 3 and under, it's FREE, and the people are nothing short of amazing. Another advantage is that their services are performed in your own home, so your kids get to stay in their environment. They offer everything - physical, occupational, speech therapy, even help with nutrition, behavior, help for kids with learning disabilities or anything like that. You can read about them on the site and if you think your child might need to be evaluated, you just call their number and they will set up a time to meet with you.



We were evaluated in December of 2010 when Sam was 6 months old; to qualify for their services, your child must have a 25% delay in one of 5 areas, one of which is physical. Sam of course met this requirement and so we began physical therapy with Chantel every other week in January. At this point, Sam was still not sitting up and could not tolerate the exersaucer for longer than a couple minutes. And from age 6 months to one year we did not have any specialist appointments. Dr. A decided we'd wait until the one year point to go any further with testing and such. He said sometimes the best medicine is just giving them time - time to meet milestones at their own pace. So that is what we did. 

Sam did make lots of progress, but at the one year point, when he still was not crawling or even getting on all fours all that much, we were asked to see a geneticist. This was probably the worst of all the appointments because you learn of what all could be wrong, basically every worst case scenario in the books, and you also have to sit and watch your child be picked apart from his hair down to his toenails on what looks normal and what might be indicative of something abnormal; it was crazy stuff like "Welll his forehead is prominent... welllll his upper lip turns slightly upwards.... wellll his nipples are 1 millimeter too far apart..." and all you can do as a parent is just sit there and try to hold it together while he gives you the list of diseases that could possibly take your child's life away. (In hindsight, I know he was just doing his job, but it was still a bit traumatizing for me as a mom.) After that appointment we went straight to have blood work done as well as some other tests. They took about 12 tubes of blood (which means Sam was stuck about 4 times total.) They were testing for everything from thyroid disease to muscular dystrophy, and the geneticist made it seem like the latter of the two was a true possibility. I tried not to look at the lab order the geneticist had written because I didn't really even want to know what the possibilities were. After that point I just asked people to pray for the tests to come back normal; that is all I knew to do. And sure enough, they did. I waited 8 long days and cried myself to sleep almost every night thinking of losing my child to a muscle-wasting disease. Then finally the geneticist called me back and said everything was normal. I have never felt so much relief in my life.


Thankfully, as you have been able to see on the blog, God has done a great work in my sweet little Sambo and has given him strength (in His own timing) and the endurance to reach his milestones, little by little, one by one. And for each new milestone he meets, we thank God; we do not take for granted one single step, or even something as simple as sitting up or pulling up to stand or taking a side step while holding on to our hands. We even smile when he misses a step and falls flat on his face, because, hey, at least he is taking steps, right?

(This is a verse I have been praying over Sam since he was born.)


Photo by Volree Wade
That is why I have posted all his progress videos and have talked constantly (or more so than I did with Mary Ella) about the new tricks he is doing; because I am so proud of him and because I am so thankful that he is improving; there are so many children who are not as fortunate as we have been. Children who do not progress, whose blood workups do not give happy results; children who will not be able to meet milestones like Sam has done; I am and will be forever mindful of these precious kids and for their families, and will also be thankful that I know a little bit of how it feels to go through those periods of worry and frustration and not knowing. I am thankful that I can empathize with people going through that and hopefully I will be able to provide some encouragement for them. I hope I've shed some light on little Sambo and maybe helped someone who might be going through the same thing! I'd be happy to talk to anyone about any of this. Feel free to e-mail me or find me on FaceBook, although email is usually better. (And keep in mind, I know there are people who have gone through and are going through far worse, with far more worrying and testing and even more severe diagnoses; I do not intend for this post to sound like, "Poor me, look what I went through with my child" because I know that this was no trial at all compared to what some go through. I was a nurse in Pediatric Intensive Care, so I've seen it. But I think any time you are faced with this sort of thing and it's your baby, it is an extremely difficult burden to bear, and when that burden is lifted, as it has been in our situation in a lot of ways, you realize how much it weighed on your heart and how stressful it truly was at the time.)

I am sorry I did not post this on the blog sooner; I guess this blog was sort of my 'escape' from the reality of knowing what could be wrong during that first year, and then after that I've had my hands full and have never gotten around to writing about it. Thanks to everyone who has prayed for him though and for those of you who have asked about him through email and messages.

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Thursday, June 28, 2012

Patio Project.

Five days ago our backyard looked like this:



And now it looks like this:


I can't even tell you how happy I am and how thankful I am for a functional backyard.
It's been a long time coming. Too long. 

We tried to get a stone patio for-ev-er from a guy who does stone work in our neighborhood but he was just too busy and could never squeeze us into his schedule. We went back and forth with him for about 5 months, calling him every week, and he'd always have some excuse like not having enough workers or enough rock or yada yada, and the only reason we stayed after him so long is because he doesn't charge for stone, he only charges you labor. And if you know how much stone patios cost, you know that stone is $$$. So not having to pay for it would have been awesome. Our neighbors have a beautiful patio that this guy did long ago and we've always loved it. But after months of getting the run-around we just decided to go with concrete. I'd seen stamped concrete at a wedding recently and so I googled "stamped concrete in Alabama" and found a guy named Greg who ended up being our patio guru.
Here is what they did:

They busted up the 3 concrete pads that were in front of our stairs and the 2 doors.
They also dug up the existing grass and started to level the ground.
All of this happened on Thursday and Friday.



On Friday afternoon while I was gone, the boss man (Greg) called and asked if I'd mind if they dropped off some gravel to be used in the next phase of the project. I told him to go ahead.
But I didn't really know that he meant a mountain of gravel and that it would be dumped in my driveway, blocking Chad and me out of our garages. Ha! 
The kids didn't seem to mind it though; imagine that.



They spent Saturday and most of Sunday shoveling and wheelbarrowing the gravel to the backyard, where they leveled the ground with it and began framing it so that the concrete could be poured.
(We weren't really expecting them to show up on the weekend, but they did, which was nice.)
They framed it with wood and peg board and secured the frames with stakes.





On Monday I woke up to the sound of a large concrete truck outside. I immediately texted all my neighbors and apologized for waking their children and for blocking the entire street. :)
Most of them texted me back saying something to the effect of "No, thank YOU! My boys are fascinated! They've been at the window all morning."
Ha! Well then, you're welcome. :)


The crew had the concrete poured into their wheelbarrows and then pushed it around back (I know, in the 100 degree weather, crazy right?) and dumped it into their framework.



Soon after they poured it and smoothed it out they would apply these huge rubber stamps that looked like mats; they fit them together in a puzzle-looking formation and then they'd use a mallet-looking tool to press them into the ground. It was all pretty interesting to watch. 
I was thankful I was indoors because [whew!] it was h.o.t.



They did this all day Monday and by that afternoon it looked like this. Pretty neat huh?


By that afternoon we could walk on it but they came back Tuesday and pressure washed it, put an acid stain on it (basically a top paint color) and then sealed it. I couldn't believe the difference the top coat made. 




The guys left around 4pm on Tuesday for the last time and told us we could walk on it around 7pm. It still had a few wet spots even then but we just tried to avoid them. We couldn't wait to enjoy it.
And I, of course, wasted no time 'staging' it and getting furniture. (Some of it I already had and it was just in our garage waiting to be used.) Thankfully I found some great deals at World Market and Christmas Tree Shops (which happen to be side by side here in Birmingham if you ever need a two-stop shop for outdoorsy stuff.)

I didn't really have a color scheme in mind but I knew I wanted it to be bright and cheery and fun.
Especially since the patio was so dark and most of it is shaded.

 Round table and chairs from Old Time Pottery; umbrella, adirondack chair and cushion, and blue 'drum' table from World Market; red lantern, citronella candle and quatrefoil vinyl tablecloth from Christmas Tree Shops!

 3-pc wooden conversational set from World Market (I believe it's called the Belize set.) Swing from Grandaddy and cousin Brooks; Lantern and ikat throw pillows from CTS


 We requested this 'step-down' area for grilling and such and I'm glad they were able to do it.
 I also love that our crabby sandbox (Sam's birthday present from us that he hasn't been able to use yet!) was able to fit under the stairs. 

Green wicker chairs, yellow metal side table and yellow ikat cushions from World Market. 

A few more before and afters:

Before:

After:

Before:

After:



Before:

After:

 I'm sure I'll add stuff as I go and I'll update more soon.
But for now we are enjoying this new space. We had some landscaping done yesterday and I have 3 new hydrangea plants outside as well as some lantanas and some sweet olive trees. I've enjoyed having my morning coffee out there the last 2 days and watering my new plants. And Sam is loving being able to play with his water toys and throw the ball with Lucy without being in the driveway, where it stays 100 degrees all day long. 

I'd love any tips on how to take care of hydrangeas! I'm sure I'll have questions along the way and they probably won't even bloom until next year anyway.

I will also be having Laura from Happy Valley provide us all with a tutorial on a DIY garden fountain. Oh yes you will, Laura. Yes you will. 
She's a fantastic gardener and DIY-er herself. She lives down the road a bit from the Compound.
Oh, and she's a world touring musician and has opened for ya know, little people like Elton John and Brandi Carlisle and has been on Leno and Letterman. No big deal.

Get er' done Laura, so we can blog it, sistah.


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Monday, June 25, 2012

What's Going On.

I am not a very good blogger anymore. Just so you know. So this is going to be one of those list form blogs, ya know, where none of my topics relate to each other but just kinda give you the gist of what's going on... hence, my creative title: What's Going On.

1. Last week I cooked a meal. 

Go ahead and take a moment of silence for that one. Amen.
(In all seriousness, I don't know how people with 3 or more kids even attempt to cook. I know this will get better when they are not so little any more, but I'm doing good to make a PB & J and whip out some cheez-its these days. I told Chad when he came in and saw me cooking to just sit back and take it all in, because it is no doubt a sheer miracle these days for him to get a home cooked meal. I'll get better.)

2. We've been so fortunate to have meals provided to us by friends. This has seriously been such a blessing, because, well, see #1. To say I'm thankful would feel like a huge understatement. 

3. Mary Ella will be 4 one week from today. FOUR. Insanity. I'm working on party stuff. Well, 'working' as in looking at stuff on Pinterest. Mostly I'm putting it off. Because I may be in denial that my firstborn is about to be four. Ugh.

4. Speaking of Mary Ella, she's at the Compound this week and is supposed to be taking swimming lessons from Mrs. Denise. Dad called this morning and said she was not happy about it and said Mary Ella wants to "keep her floaty on forever." Wellllll that ain't happening. Hopefully she'll give in and want to learn how to swim with the other kiddos. There will be bribery involved, believe me.

5. I have a chronic can't-unload-the-dryer-or-dishwasher problem. If anyone wants to come do this for me, you are more than welcome.

6. I did a little switcheroo in the girls room this weekend. I switched their beds. I felt like the crib was preventing a lot of natural light from coming in, and there is also a vent over by that window and every time I would go pick Emma Kate up after a nap, whatever part of her was not wrapped would basically be ice cold. So I switched their beds and also rearranged the shelf in the middle.

Here's the before:

And the after:

I also felt like the little window nook was wasted space with the crib being over there, so I used it to make Mary Ella an area where she can keep her books, keepsakes and dolls. Not sure why I didn't think of this before! 




 7. I am also working on making the sewing/craft room a more functional space so that when I actually have time to sew and craft, I won't be overwhelmed with the hoarders-esque room that it has become.
But of course I don't have a picture of the hoarders-esque room because I forgot. 
So here's the before shot before it became hoarders:

The arrangement wasn't all that bad except I realized pretty quickly that having my computer downstairs wasn't going to work. I don't have time to go down there every time I need to update my phone, transfer pictures, edit my pictures, update my calendar, etc. So my computer is now upstairs. 
I also didn't like that fact that I only had one sewing area; when I make appliques I have to iron, cut, piece together, etc, so I needed two separate spaces; one to iron/cut/make appliques and another area to sew. So I made myself an L-shaped sewing area by adding a $20 craft table from Christmas Tree Shops and covering it with a tablecloth (also from CTS) so that I could have storage underneath without causing an eye sore. 




I still need to organize my supplies and that will come in time.
I did organize my fabric last Friday night while Mary Ella and I watched "Tangled" downstairs. 
(And yes it took the entire 2 hour movie to get all my fabric to look like this. Ex-haus-ting. But worth it. Although now it looks like I hardly have any fabric! Guess that's a good thing though.)


8. I did have time to do a little sewing the last time I was up at the Compound and I made these cute shirts for all my kids. I like the stacked monogram. (The fabric is just a fat-quarter packet of coordinating fabrics from WalMart.) 


By the way, all this applique madness happened after midnight. I'd like to dedicate these shirts to Crystal Light Energy packets, the peach mango flavor. Thanks Dad for introducing me.


I also made these flower shirts with rick-rack and buttons. I love the way they turned out.
And I love the way Mary Ella has a Snooky poof in this photo.


9. Since we got back from the Compound I've been stuck here at home due to our backyard makeover. 
Did I ever tell you we have a not-so-great backyard? Well, we do. It's basically not functional AT ALL. Due to a huge mountainous slope that goes straight down hill and absolutely no level ground anywhere in the entire yard whatsoever. So using a sandbox, baby pool, etc has always been a challenge. And getting a swing set is completely out of the question. (We bought our house before we had kids so a level backyard wasn't all that important to us then. Oh how you learn!) 
Our under-the-deck area has pretty much been the only area for outside play. But it's a basically a big mud pit that is occasionally infested with man eating black widow spiders. So, ya know, my kids weren't exactly allowed out there... um... ever. 
But NOW - finally! - we are getting something done. A patio, to be exact.
I will post about the entire project soon complete with photos. 
But for now I'll show you the ghetto before pictures:



You can't really tell by this photo but this goes straight down hill. Hopefully it will make for a killer slip-n-slide party one day when the kids are older. 

I'll post the after pics when they're all done and we have a somewhat functional space!

10. Have you ever in your life seen anything more scrumptious than this child?



No?
I didn't think so.

And remember when I told you in the last post how she likes to 'coo' at her owl?
Well, I took a video. This is the sweetest thing ever. Enjoy.


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