Beach Bums

Four great days in Charleston with some of my favorite people, decent weather, 2 agreeable little travelers, and the beach made for a great memorial day and some lots of great photo ops of two sweet little boys...



And just for fun, here's Cort in the same swimsuit and hat ...he was 6 months old in this picture( Cohen is almost 14.5 months) :)




Back to the present....

proud of his shells...

Cort with cousin, Nicolas( we were able to spend time with Chris sister on Friday and at the beach on Sat. too)


Love this series of Cort splashing in the tidal pool... this is actually WAY narrowed down!!






Cohen loved the beach!! He was a big fan of the sand...

cute little piggies






Cort had to build his own tidal pools( from Max and Ruby if you know that cartoon) He built one for Cohen and one for himself.


Cohen absolutely adoring Stabler!!!

Me and Kelly( one of my best friends and college roomies) outside of the Chic-fil-a that took them away to Charleston in the first place!!! It was GREAT to spend time with them in their new home in Charleston. Big thanks to them opening their home to all of us for the weekend. Miss her already.


It was a very full weekend. We were able to see lots of friends and family along the way. In Columbia on our way down, we visited with my grandparents, parents, Chris' cousin who was in town from Florida. In Charleston we spent time with Chris' sister, Kelly and John, and several old college friends who were in town for one of our friend's ordination services( which we were so happy that Chris got to go to). It was all a ton of fun and even though Cort had an ear infection and Cohen came back with an ear infection and sinus infection, the boys did great!!!

If you would...

..please pray for Chris' family. His grandfather is very ill. The doctor's are giving a prognosis of about 2 weeks unless he has surgery. The surgery carries a high risk that he will not pull through it or that if he does, he will develop pneumonia and not recover. They have some very big decisions to make tonight.

Please pray for his grandmother as she deals with such deep grief and for the rest of the family( he has 5 sons) as they deal with all of this.

Curl

I know you probably wouldn't beleive it if i didn't give you a picture but Cohen's hair is seriously curly....



Don't see it? Look again....





It's really only curls in the back but boy does it curl. Though many days, it's just a big ball of frizz!! This straight - haired girl doesn't quite know what to do with curly hair! I love his curls and keep putting off getting his haircut bc i don't want to cut them off!!! I guess at some point visual impairment will be a big enough motivator and I'll have to cut it.


* Still don't know when the MRI will be. ( See post below if you missed the medical update)

Medical Overload

Cohen had 3 appointments this week.... his second EEG, hearing test, and ENT appointment. The update is long - sorry, I just really like to get it all down for my record keeping and "scrapbooking" purposes. Some of this is from appointments a while back that I never got to record.


He passed his hearing test. Big praises. It's hard to get a definite result on a 14 month old so they just classify them in the top, middle, or bottom third. Cohen did great and was in the top 3rd for hearing. We weren't really suspecting hearing loss but he had the test for 2 reasons - first, just because he's had a lot of ear infections, has tubes, and isn't talking yet. Second, just for a baseline, as hearing issues can be common for people with dwarfism.

His ENT appointment went fine. His tube has fallen out in his left ear but we were expecting this because in March it looked like it was about to fall out. He has no fluid in his ear so we'll sort of wait and see as far as replacing the tube goes.

His EEG on Wednesday went fine again as far as how well he handled it. We were even able to go to therapy first and then go straight there and he was such a little trooper still. Again, we didn't see the activity that concerned us during the EEG. I wasn't too frustrated by this because I wasn't expecting to see it since he hasn't been doing it very often right now. ( which is great!!) But it doesn't give us much in the way of answers. Yesterday, I spoke with my pediatrician and she and I decided to go ahead and get the ball rolling on scheduling an MRI. It's really something we would have liked to waited on until he got a little bigger but something that really needs to be done for lots of kids with dwarfism and with the issues we're currently having we just feel like it's time to be more proactive instead of reactive. The MRI will be for his head, neck, and spine. The biggest thing we're interested in other than seeing if we see anything causing the odd behavior we've seen, his cervical spine. I was a little nervous to request the MRI because sedation is a big risk for Cohen. But later that day, the neurologist called, confirmed what I expected that the EEG didn't show anything again, and then said he wanted to do an MRI to check his head and cervical spine. Sedation is still a big risk but now I don't' feel as much like I'm the only one thinking it needs to be done. We don't have a date yet for the MRI and in the meantime, I'm busy making sure all the safeguards we'll need for him will be in place.

We're in sort of an interesting crossroads with Cohen's medical care. We have some great doctors here, and individually they all take great care of Cohen. However, dwarfism, in and of itself is not super common, and Cohen's purposed type of dwarfism is not something any doctor in the US has ever dealt with. So far, we've accepted Cohen's medical care based on the little everyone knows about what is "suppose to be" with Odontochondrodysplasia. But now that he's gotten older and we aren't just trying to make sure he can breath, we're getting to a place of feeling like we need a little more. Also, Cohen's diagnosis can't be confirmed so we aren't always super comfortable treating him with the assumption that his diagnosis is definitely correct.

In March, we had a slew of appointments for Cohen.... ENT, 1 year check up, developmental peds, pulmonologist, orthopedic at Shriner's, and geneticist. While Cohen checked out relatively well in most of these appointments, overall we feel like there are some holes we'd like filed in. Not, because any certain doctor isn't doing a good job, but just because it's SOO many different doctors and none of them are experts in dwarfism. So, in March, we requested that our geneticist refer him to Alferd I. Dupont Institute in Delaware and that we make it a goal for him to be seen there sometime within the year. Just to get a better overall picture, from somewhere that has expertise in dwarfism. He was totally on board with it. With all that's going on, we now plan to try to make that happen sooner rather than later. I 'd also like to do it while we're out of RSV season and all. ( Love that those monthly shots are done, by the way - at least till next fall!) We've so far been doing a little bit more of a wait and see approach and are just feeling the need, like I said earlier, to be a bit more proactive then just reactive.

Of course, all of this has to be balanced between being wise and responsible but also trusting God with it all in the end. I saw a quote this morning that said, "Christianity isn't about being a pessimistic or an optimist but rather being a realist who has confidence in God." We are trying to make sure that Cohen receives the medical care he needs but at the same time not be consumed and overwhelmed with worrying over it all too much or all the time.

In the midst of taking care of Cohen's medical needs, life happens. And we so enjoy that life with him and Cort. We don't ever want to feel like we let the "issues" outweigh the enjoyment of life with him. He's such a happy little boy and a blessing to our family and we couldn't be more proud of how far he's come or how great he's doing. Our attempts to make sure that Cohen receives the medical care he needs and the therapy he needs to help with his development, is secondary to the love and life we share with him.



For more documentation purposes on some appointments that I never got to record:

At his pumonologist, they were really thrilled with how well his lungs are doing. Praise God!! We had been noticing a pattern of a night time cough so they sent us with some nebulizer mouth pieces ( we already have a nebulizer for Cort) to try when that happens and if it gets worse then might have to do some reactive airway disease medications. We will also probably do a sleep study at some point. Since, that appointment, we haven't had to use the nebulizer!! YEA!!!

His developmental pediatrician did an evaluation on him at his one year check in March. At that time he had age equivalents of 6 months for physical, 10 mos. for language, 12 mos. social and emotional, and 8 mos. for cognitive. These were all about what I was expecting and have seen progress since then with all of these areas. We see them again between 15 and 16 mos. We are switching nurse practitioners there just because they feel like what is a little more knowledgeable with some of Cohen's medical issues.

I also requested a speech eval and so we have that on May 26.

We will being seeing his eye doctor for a follow up in June and probably his cardiologist just to make sure that his labored breathing hasn't put any strain on his heart.

His Shriner's appt. went fine and we plan on going back at 18 mos. to do xrays again. We're going to be really interested in seeing what sort of orthopedic info we get up in Delaware if and when we go. Shriner's, by the way, is a great Hospital here in Greenville, that serves patients orthopedically for free and there is a risk of it being shut down due to the economy. The final vote will be in July as to if it stays open or not. It is such a blessing to SOOO many people in this region. Please pray that it doesn't close.


Okay - done with all the overload of medical information.

The story of two boys...

Two sweet boys playing on the chair with a blanket.

One sweet boy plays peek a boo with the blanket....


Other sweet boy wants the blanket... "Please, please, can I have that blanket?"

"Oh, goody, goody, I'm getting the blanket! I'm getting the blanket!!!"

"I don't want the blanket! I don't want the blanket!!"

Kiss it, make it better...

All better. " I told you I didn't want that silly blanket."



Cohen's EEG is tomorrow. Please pray they are able to catch the activity on it so we can get some answers! We really appreciate it.

More new pictures below if you're interested!

What've we've been up to this spring....

Building the swingset with Daddy
Enjoying the swingset....



Pulling out the pool on the first really warm day.....



Cohen finally "warming" up to the cold water....



Frequent local park playdates with good friends....
Enjoying every minute of it!!

Emotions according to Cort

Happy

Surprised

Sad

mad
Mad take 2

Scared
scary

Not sure..... :)

Could not have been more....

perfect.

Yes, the day was great. Being woken by a jumping boy. The French toast breakfast. Church. Yummy lunch at a downtown deli. Walking the streets of the art festival. A little reading time. A little shopping. A little outdoor play. Cook out in the back yard. Cards and presents.

All of it was great.

But this is what makes it perfect....

This is my 4th mother's day with Cort. 2nd with Cohen. It blows my mind. Today is suppose to be for celebrating mothers and my sweet husband and 2 little boys did that well. But to me it's a day to celebrate the privilege of being a mother. I do not take it lightly. I am grateful beyond words to celebrate with both my boys in my arms.

Chris and I are blessed to have both our mother's to be thankful for today as well. We love you mom(s)!!

Praying for all who celebrate with empty arms. You are thought of today. Praying for those who celebrate today without their mother's here.


Happy Mother's Day to all!!!

Lots of thoughts

*** Consider yourself warned - the title doesn't lie - LOTS of thoughts ahead - there's also some formatting issues that I can't figure out - italics for the last half of the post that won't undo - sorry***



I'm feeling much better about everything. We're still hoping for a cancellation soon but we haven't heard anything yet. I would really love to not have to wait until next Wednesday to do another EEG but am doing okay with the waiting right now. Somewhere, between Thursday and Friday of last week, God just really started slowly giving me a peace about everything, and by Sunday I started really feeling the burden lifted. It's reminiscent to how I felt during Cohen's pregnancy... worried? yes Scared? absolutely.... but also hopeful and trusting. It's not so much a peace that everything is definitely going to be perfectly "okay" but a peace that whatever comes will be just what is suppose to happen and settling in to us being okay with that.

A few weeks ago, when I first took Cohen in about the odd behavior, he had been doing it very frequently throughout each day. Then, in between the pediatrician and waiting to get the 1st EEG, he did it, but much less frequently. The same thing has happened here. Since we went to the neurologist and were given this waiting period again, Cohen's has been doing it much less frequently and also with less severity. Though, this doesn't make me feel like it might just go away on it's own (though that would be GREAT and maybe it will - we've seen "stranger" ;) things happen ), I am so grateful for the graciousness of God to give us that reprieve. It's much easier to wait, when it isn't staring you in the face so many times a day.

I've done some research and had many comments and emails about the reflux thing. So to try to address some of that...

From the research i've done, Cohen doesn't really seem to be fitting that explanation perfectly but from some of the comments and links I've been sent, it could be.... so that makes me hopeful. The biggest differences between what Cohen seems to be doing and what some people have described is 1. his eye movements( for Cohen, it's not really his eyes, just his eyelids and what some have described with the reflux condition - rapid eye movement is involved.) and 2. he doesn't have torticollis nor does the behavior he's doing exhibit anything resembling torticolis. I thought he might at one point when he was an infant because of his side preferences but he didn't and he isn't doing any head tilting or turning with this behavior we're seeing. He has OT and PT ( hey Mary and Heather!!!) every week and they are pretty on top of things so I think they would have caught something like that, anyway. :) But I've seen and heard so many different odd things that have ended up just being reflux so that makes me hopeful. Cohen does tend to it most when he's eating but he does do it other times too. This would def. jive with the reflux idea with it happening mostly at meals. Funny, both my boys have had reflux... Cort's was really severe(losing weight, major projectile vomiting, refusing to eat, not sleeping, lots of screaming) and Cohen's has been more mild... and we've always done everything we could for them NOT to have it... both were(cort) or are(cohen) on medications and now, I'm almost praying that Cohen's reflux is more severe than we thought!! Funny, how stuff will put things in perspective.

I spoke at great lengths with my pediatrician about where we'll go from here if we don't catch the behavior on the EEG. There are several options but some involve admitting to the hospital which is something we want to avoid if possible to keep his exposure to illnesses down. We'll visit all those ideas when the time comes. And can I please just say, how blessed we are with our pediatrician. She spends time with us when she does not always have the time, she checks in on us, she cares, and she's invested. It's hard to have a child with a diagnosis that nobody knows anything about because he's the only one in your country with it but it helps to have a doctor that cares in your corner.One that fights with you to get what your child needs. We really are so blessed in that!!!

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We've been studying Ecclesiastes in church and while at first glance it isn't' the most uplifting book in the Bible, I have really enjoyed the series so far. When you get to a place in your life(basically when you leave childhood and enter adulthood for most people) where you have seen so much pain - not necessarily in your own life - but even in people's lives around you - there is something actually comforting about the Biblical support of how broken the world we live in is. ( chapters 1 and 2) And in chapter 3, when it's talking about the seasons for everything, it's incredible to read it and actually be able to recall or name each of those seasons in our lives. We don't get to pick just the good ones, it's all a part of our lives. And it's all from God - it's all part of His plan. Each season is a part of your life - it makes you who you are, it brings you closer to God - not just the bad times but also the good. And for every bad season and even in every bad season, there is good. Those are the things to enjoy.

I love when you read something you've read over and over again but then it's almost like seeing it for the first time:

⁹ What do people really get for all their hard work? ¹⁰ I have seen the burden God has placed on us all. ¹¹ Yet God has made everything beautiful for its own time. He has planted eternity in the human heart, but even so, people cannot see the whole scope of God’s work from beginning to end. ¹² So I concluded there is nothing better than to be happy and enjoy ourselves as long as we can. ¹³ And people should eat and drink and enjoy the fruits of their labor, for these are gifts from God.

¹⁴ And I know that whatever God does is final. Nothing can be added to it or taken from it. God’s purpose is that people should fear him. ¹⁵ What is happening now has happened before, and what will happen in the future has happened before, because God makes the same things happen over and over again.

Ecclesiastes 3:9-15


"Yet, God has made everything beautiful for its own time"


I have seen this to be so true in some unbelievable ways over the past year or two. I have seen beauty come from things that really should have no beauty at all. From the loss of a mother or father, a job, a loved relationship, a dream, or an expectation, to even the moment of feeling your child take their last breath. I have seen the heartache, the misery, the grief, the agony,some from the sidelines, some first hand, but I have also seen and felt indescribable beauty in it all. That beauty is only from God. And why are we at all surprised by this? As Matt said on Sunday, When Mary was at the foot of the cross and her only possible question left is... where are you now, God?... God's answer? I can even make this beautiful.

And he did!!

And if God can make what happened on the cross beautiful, then what in my life do I not think he's powerful enough to make beautiful? Why even question it? Why ever fear it?


He is a God of restoration. That's what he's about.

Yes, here on this earth their are all sorts of seasons. Good and bad. Hard and Easy. But there is a season ahead that will last an eternity. A season so beautiful that our minds can not even begin to comprehend it. And this part of our lives, the part that we think matters so much day to day is just a small, tiny speck, in the grand scheme of things. And so, why waste time harping on the hard parts. Why not enjoy what God has given us to the fullest extent possible? Knowing our hope is not in the things of this world. Knowing that we cannot see the whole scope of his plan but He can - and the end result is beauty!!

As I listened to this on Sunday, I felt the feeling I felt over and over again while I was carrying Cohen in my womb. In many moments of desperation, when I just felt overwhelmed at my love for Cohen. When my body physically hurt at the enormousness of it, when I would call it out as if my love would be enough to change it...I would hear God say it the quietest of voices, " I love him more"

And He does. Love him more.

And I laugh a little and am shamed at the absurdity of me not wanting to give Him control of something as little as possible seizures( yes, I just said little - you might have to remind me of that sometime later ;)) when He is the very one that sustains Cohen's life. When He is the very one who breathed life into him at birth and still does today. When He made something "incompatible with life" oh, so compatible.

Another question asked on Sunday was, "What if all the suffering is part of God's plan for this world? What if it's all to bring him glory and bring you closer to him? " Isn't that worth it?

From where we stand, it is. Even when we sometimes forget that.



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From time to time, I think of taking my blog private. I never started the blog for anything more than for my out of town family to get to see pictures and the doings of the kids. And while my blog certainly doesn't pull in the attention or comments of say, MckMama's, the reach of it is much bigger than I ever expected, set out for, or even desired. But I received an email two nights ago that is exactly why I don't take it private. If you would, please pray for a sweet lady, who just received the same fatal diagnosis for her sweet baby girl that Cohen received in utero. Not only is it an honor to be allowed to offer some comfort to people like her - to offer someone tangible to grab hold of when you think no one else has ever walked in your shoes. But it also is a great reminder to me of where we have come from. The gift God has given us. The blessing that it is to even be waiting too long for an EEG as we celebrate his 14 month mark today!! Please pray for her, like you prayed for me.... a miracle, time with her daughter, comfort, and peace.

Also, this blog has been such a blessing to us - to have a way for people who care to check in and pray for us. To receive encouragement and support along the way has been so valuable to us. And so have the connections and relationships I've made along the way in this blog journey. I used to think blogs were super silly - strange to put your life out their like that and like I said at first it was just for our family and a few friends - the jump to having "strangers" read it has been a little strange and sometimes overwhelming but we have been so blessed through it. Thank you for that!!!

I promise soon, I'll get back to posting cute pictures and normal day to day things. :) As always, I have multiple posts in draft. I'll hopefully get to them soon. Thanks for praying for us though when times like this settle in .