MRI results

Sorry we've been MIA. We were enjoying a great beach vacation last week - I'm currently weeding through the millions of pictures we took and working on that post but wanted to let everyone know about Cohen's MRI results.

We had talked with our pediatrician before we left for the beach and had received an overall good report but with a few things noted that we really felt we needed to talk with the neurologist about to get a full understanding. So I called to get an appointment and they were able to see me today( super fast for a specialist so we were super thankful!)

Like I said, overall, things looked GREAT. Some of the things that we were looking at... all the cervical spine structure, shape, size, etc. , forum magnum size, circulation and "communication" with his lower body( since he doesn't like to bare weight), stenosis issues..... all of that looked perfect!! (most of those things are just "risk" categories for lots of people with dwarfism - not neccisarily with Cohen's type but since his is so rare - we and doctors felt it important to have a baseline and to check).

The three areas of note were:(Warning: I am so not a medical professional so sorry for "laymen" interpretation)

1. enlarged ventricles - which we already knew from the CT scan but the MRI confirmed that they were still with in a very safe and normal range, and that their was no cause for alarm or concern at all. ( this is common in dwarfism and can become a problem or be indicative a problem if their is a lot of fluid build up or pressure ( hydrocephalus)

2. some flattening of the pituitary gland... we don't have a ton of information as to what this might mean but again, something apparently( we didn't know this) common as well with dwarfism, and just good to know if we notice any sudden weight or growth changes( low or high) - obviously a little hard to monitor when he already has a growth issue... this is just something we'll want to talk with our pediatrician and geneticist about a little further.. but again.. no alarm or major concern.

3. There was some brain atrophy noted. This was by far the hardest one for Chris and I to understand and come to terms with. This sounded really bad to us but after a thorough explanation we again feel like there is no major cause for alarm or concern. Basically, Cohen's brain is a little smaller all around than it "should" be for him. They do not feel like it's due to something happening( injury, seizures, etc.) or that it's deteriorating... just that's how is brain is. The term atrophy was what was hard for us to swallow because you think of it, or we did, as "the dying off" of something but they are using it just to describe interior space in his brain, not deterioration of his brain. ( the "space" and the enlarged ventricles sort of go hand in hand a bit) This is also apparently common in dwarfism and does not necessarily really mean anything as far as function or development. Now, for us, this was a little hard to swallow because of all of Cohen's delays. We of course immediately wonder if this is the "cause" of his delays and if it means he will always be behind(versus him just being behind due to breathing and physical delays)... however, all of the white and gray matter of his brain looks great and the amount is as it should be for a child his age so they don't currently have any concern of "damage" or "issues." Basically, while not good news per se, not necessarily bad news at all either. We will most likely repeat the MRI in the future( not super excited about that) just to be sure that the atrophy isn't an "active" thing. We'll meet with the neurologist in October to reconvene. In the meantime, it doesn't really change where we are as far as Cohen's develop.... just continuing to hang out in the "wait and see" mode which we are slowly adjusting to... realizing that this will most likely always be the case with him.
I'm not sure I explained that well at all - if anyone as questions feel free to ask. Please pray that the doctors are correct with their lack of concern and that this issue won't cause an issue for Cohen in the future or with his development.

So in a nutshell, all of the things we were checking for checked out great. Such a big praise.

A few other medical things, while I'm at it....

1. Cohen will have a sleep study done in September to check for sleep apnea. This, again, is mainly precautionary as this can be extremely common with dwarfism and to get a baseline.

2. As far as his possible seizure activity, we are still seeing it some but much less frequently. If it increases again we will call and they will do a prolonged EEG. As this point, he doesn't do it everyday, so we don't feel like it would most likely catch it if we did it now. While this is another area that we don't love the "wait and see" thing, we DO NOT want him on seizure meds if he doesn't need them. We won't treat him unless we can solidify that they are seizures. The only thing that would change that is if we begin to see regression or if it become a more obvious case. Our prayer is that it will all just go away on it's own and won't require further
"investigation"

We are beyond thankful for how we continue to get great reports where bad reports could be expected!! God continues to carry us through this journey with Cohen in unbelievable ways.

Ok - I think that's it!! Stay tuned for two little boys who LOVED the beach! I'd promise them tonight but in all honesty I doubt that's going to happen!!! I might have to do them in installments anyway!!

We're Home!!

We're Home!! Yep, that means we didn't have to stay over night!

Cohen did great! The anesthesiologist was awesome! He was very nice, caring, and cautious. We were able to stay with Cohen until they "gassed" him for his IV and breathing tube. It was difficult and a bit emotional to see him go limp like that but I was glad to be with him.

They got the IV on the first stick( a huge victory with Cohen!!) and there were no airway issues at all with the placement of the tube( such a blessing!!). The anesthesiologist apparently felt like Cohen was staying out very well on the gas and so he was able to do the whole MRI on that instead of having to have the heavier IV drugs!! Again, such a blessing!! The MRI took about an hour and a half. Chris and I hung out in the waiting room and periodically nurses stepped out to let us know that he was doing well. He was awake right away since he was just gassed and only slightly fussy. The nurse was great in recovery, Cohen was doted on, and the doctor and the anesthesiologist checked in on him several times. He did get sick to his stomach from the anesthesia once in recovery and after I fed him when we left but he doesn't seem to feel to badly.

The only hiccup so to speak really started yesterday. Cohen began running a fever yesterday afternoon. I took him to the doctor and with absolutely no other symptoms we think it's either from his vaccines or just a simple fever virus. We were cleared to continue with the MRI. He didn't have the fever at all this morning but when he came out of the MRI he was at 103.5. Somehow, the communication didn't go all the way through and they had really wrapped him up to keep him warm in the MRI so within 30 minutes of cooing off it had dropped down to 102 and with a little tylenol was at 99.5 within an hour. I hope whatever is wrong goes away soon, I hate that today had to have so much icky stuff for him... not eating, IV, anesthesia, throwing up, missing his nap, and a fever. Poor little guy - I guess we're just knocking it all out at once!!

They kept us in recovery for longer than normal but we were gone with in about 3 hours from when the MRI was done. He's sleeping peacefully as I type.

The anesthesiologist, who was so awesome.... cuddling Cohen until I got to him, letting me carry him instead of pushing him on the bed, requesting a rocking chair for me in stead of the bed, checking in more times than he probably had to, and my favorite.... telling me strictly "off the record" that the technician didn't see any red flags.

While, we certainly have to wait for all the doctors to look at it before we know for sure, it certainly makes the waiting a little easier!! We're praising God today that Cohen handled it all so well and that as always, He went before us.

MRI and other updates

Cohen is having his MRI on Wednesday at 9:00 am.

He will go under general anesthesia and will have a breathing tube. At this point, I'm more nervous about the anesthesia then the results for the MRI. Going under is a big deal for anyone, for any little child, but especially for people with dwarfism. Please pray that he handles it well and does not have any respiratory issues with it.

We met with the anesthesiologist last week and he said for us to be prepared to possibly stay over night for observation. This isn't exactly what I was hoping to hear but am thankful for the head's up of the possibility and for them being cautious.

Our understanding is that the actual anesthesiologist will do it and stay in the room the whole time. He will, of course, be monitored.

We greatly appreciate your prayers that all will go well and that we'll get good results from the MRI as well.

There are 3 new posts below. Enjoy!!

I Finally Did it!!

I broke down and got Cohen's hair cut. It was time as much as I hate to admit it. She didn't cut much - mainly just the front, which was way longer than the rest anyway since he never lost his baby hair there, and he hasn't lost his curls...yet.

He didn't mind it but was annoyed about her getting in the way of his balloon playing. We didn't catch great pictures at all but it's documented just the same...

I don't love it - but I never love hair cuts right away - there's nothing wrong with it - I just don't actually love the clean cut look - in a week or so, when it's gotten a little shaggy again, I'll be good to go with it. It is great to have it out of his eyes. I'll probably have to break down and take him back in to get the sides and back cut before too long or he'll end up with a "business in the front, party in the back" look!!!

The whole thing was quite the experience, though. Cort got his hair cut first - I can't even begin to think of how many haircuts he's had - his first one was at 9 months - that boy seriously has some hair!!! The place has 2 completely glass walls and while Cort was getting his hair cut this mamoth storm rolled in - the wind was CRAZY. It actually blew the door open and tons of leaves blew into the store.

Chris met us there after work to help with Cort, while Cohen got his hair cut and so did my friend Kelley since she lives right up the street. She ended up being able to get her 2 kid's hair cut too so it was a whole family and friend affair. Gotta love it, right?

We headed to a nutritious Pizza Inn meal afterwards. The kids had a blast!!

All I want for christmas....

is to have more than one tooth by then!!

He's finally on his way!! Cohen cut his first tooth..... it's barely in yet, but we've broken gum.

Here's my attempt at catching it on "film"...





Oh, well. Maybe next time.

15 months old

Wow! Some how that just seems really old!!! I really just never imagined we'd be here-celebrating 15 whole months with our sweet son.

I missed a 14 month post but that's okay -I do what I can, I guess!! :) Cohen is a ton of fun these days. He sits so well now unsupported. It all just sort of happened and I can't even be sure when I stopped feeling like I always had to put pillows or something soft behind him. He still doesn't catch himself if he goes back but he hardly ever falls anymore. I think he loves to sit up and play and the new freedom that gives him. I can sometimes tell he gets tired and starts to have a little trouble breathing but not too badly. When on his tummy he definitely works to try to get to things but hasn't figured out the crawling thing. It's very difficult for him to lift up off the floor and he sort of ends up spinning himself around a bit - it's super cute, though I imagine a bit irritating to him. He's tolerating a little more weight on his legs and knees and still enjoys the exersaucer.


Some of his newest skills include, playing with two objects at one time, occasionally putting things in containers( previously he only took out), starting to use more fine tuned fine motor skills for cause and effect toys( pulling strings, flipping things over, pushing buttons, etc.) as opposed to just patting or tapping things to try and make them work.


He's all done with his bottles!!! He dropped his night time bottle with no problem. I thought I would really miss that time with him but I really enjoy getting to read and sing to him longer at bedtime. There are lots of things with Cohen that makes him see younger than he is so I like having his night time routine seem a little more "big boy." He still LOVES books. He loves turning the pages( and patiently waits for me to finish reading the page first), patting the pictures, and making me point to things in the book and name them.

He's eating solids better and better. I feel like he's starting to chew better and we've been able to use less purees. I still have to use baby food some to be sure he's getting enough but we're making progress. I've gotten a little more creative and Cort and I made him some mini chicken pot pies and froze them. I need to make up some other things like that too bc it lets me tailor it to what Cohen needs( ie. pulsing the filling a few times in the food processor so he can chew it more easily) - I used to make a lot of stuff like that for Cort when he was little but haven't been as good about doing it for Cohen. He drinks from his straw cup completely independently now and tries really hard to tip his sippy cup up but can't quite get it yet. Those little arms can't quite reach easily enough!! He can totally finger feed himself but still prefers for me to feed hm. He really likes to let mommy do for him!! He's developed a bit of a sweet tooth - he doesn't hesitated to finger feed anything sweet and he can down some ice cream!!


He's so close to cutting his bottom teeth. I expect to be posting a first tooth photo soon if I can get one!! Hopefully that'll help us get to the next stage with eating.( he's cut a tooth since I started this post - I'm trying to get a picture to post!) Last gummy smile....

He babbles and talks in jibberish all the time. I keep waiting for that first word. We're on the waiting list for speech therapy. We aren't sure, but he may be starting to sign "more." He only does it on the swing and the slide outside. It's a little hard to tell if he's doing it or just doing his hands back in forth as he fusses for more. He certainly lets us know if he wants something or if he doesn't like something.

He loves for us to sing songs( a current favorite is "Old Lady Who Swallowed a Fly"), play peek-a-boo, read books, swing and slide outside, and rough and tumble play. Recently, at a park, he rolled down the grassy hill over and over again with a huge grin on his face! He laughs a little more often now. He used to be a bit stingy with his laughs. He loves dogs and giggles every time they bark - even if he can't see them. He has really enjoyed all the summer time activities and definitely enjoys the water.

He's wearing 0-3 and 3-6 months size clothes. His 15 month well check went well. His stats were:

Height: 25 inches
Weight: 13lbs 11 oz.


He really is such a blast these days and I can't believe how fast the time flies. We're looking forward to all that lies ahead!!

Cort getting in on the monkey picture action....

Celebrating Babies and Trucks

This weekend, we had a "Sip and See" for one of my good friends, Miranda. For those of you who aren't from the south - that's basically a southern way of saying a baby shower after the baby is born. Sip on some "tea" and see the baby. It's a somewhat common thing to do for subsequent pregnancies. It was the perfect size 12-15 girls and we also showered Miranda with loads of diapers....exactly what the third girl of the family needs!!

We had yummier food than just tea and greatly enjoyed the girly hang out time. I have to toot my horn just a bit with the diaper cake. :) It's my favorite of any I've made before..


Brooke is one adorable little baby. She fits in well with her older two sisters at home!!


While us girls were chatting it up over at Kelley's house and loving on a sweet babe, Daddy took the boys downtown for the annual "touch a truck." ( yes, we may live in the south, but we don't celebrate new trucks like babies at a baby shower... you didn't think that did you?) All sorts of trucks in all shapes and sizes line the downtown streets and allow kids to climb up in them.


My super creative husband put the bumbo in the wagon so he could take the boys in that instead of the stroller!! (Chris said that Cohen is crying here because he stopped pulling the wagon to take the picture - apparently Cohen did not think the picture was worth the stop.)

Helping EJ

You may notice this on the side of my blog...

You can click on it to read about their story. But I wanted to tell you a little myself too.

This family, The Mullikins, attend church with us. While my connection to them, is well, really just through connections, I have really felt drawn to EJ and her story. They have been members of our church for long time. And some of our best friends, The Burn's, are friends with them and Ryan works for EJ's dad. More recently, EJ's mother and I have kept up with each other through our blogs as well. I have always had a special place in my heart for children and families who struggle with disorders or disabilities. If it's possible, I have even a stronger heart for it now that we have Cohen.

EJ is diagnosed with Sensory Integration Disorder and Obsessive Compulsive Disorder. The way this most manifests with EJ, is through eating, or rather lack of eating. Throughout , the Mullikins have loved and cared for their daughter through all of this. They have sought God for direction, wisdom, and peace as they try to help their daughter be willing to eat. They have sought out all sorts of medical help for EJ over the years and have finally come to the place where their best and only option is for an inpatient stay at the Remuda Ranch, a place designed to specifically help and treat eating disorders. This place will hopefully be exactly what EJ needs. However, it is incredibly expensive and they need help.

I have never done this. We have never asked for anything more than prayers for us or for anyone else on our blog, unless it was a charity organization. But I feel compelled to put it out there. First and for most, I'd askif you'd be willing to pray for this family. If you feel so led, visit their site and see how else you can help, and possibly consider donating. They are also doing this really neat golf fundraiser. Ryan Burns is participating, if you are looking for someone to sponsor.

Water Baby

The pics our from Chris' phone as we didn't have our camera with us but isn't he just so cute swimming? He loves the water!!! He splashes and kicks his little legs - love it!!

Funny story from that day at the pool about 2 or so weeks ago. There was another lady at the pool with her 14 month old son too. We talked with her a bit and she knew about Cohen having dwarfism. While we were both in the pool with our little ones, a young girl - probably around 9 or 10 years old was doting on Cohen. She asked me how old he was and I replied, "about 14 months." She then turned to the other lady and said, "how old is yours?" She replied, "14 months old." The little girl looked back and forth between Cohen and the other little boy as said to the other mom, "Wow, he's huge!!"

I had to laugh.

Going on a Bear Hunt

When I taught school as a special ed teacher, I didn't have a curriculum. I just taught to each child's IEP's and I had to make up all of my lessons. While the vast majority of my day was spent teaching functional skills, we still did fun creative units. We'd often have a theme of the week or even sometimes the month and this was what we'd base circle time, crafts, and center time or other activities on. One of my favorite ways to do this was to build off a book... I love to read, love children's books, and it was an easy way to come up with ideas to me. One of my favorites was Going On a Bear Hunt. It's an adorable little book.

Each child made their own bear hunt book. Cort's at such a fun age to do these types of things with after a quick trip to Hobby Lobby we started our own Bear Hunt book. We've read the book millions of times before so this was also a great way to sort of bring something new to an "old" book. I'd thought I'd share if anyone else wanted to do it!!! There are tons of things to teach through it....sensory stuff, cutting, gluing, mixing colors, weather, environments, the list goes on and on.... you can tailor it how ever you want. It's also great for a wide range of ages and ability levels. If you're interested....

Grass....Have your child cut the grass, curl some of it around a pencil to make to a little more 3 dimensional.



River...Mix equal parts elmer's glue and shaving cream. Add food coloring. Paint with it as you would with normal paint and it will be puffy when it dries.


Mud...Step into a tray or plate of brown paint and walk across several sheets or one large sheet of paper for the mud. Cut out the right size for the book or have him step on the constrcution paper as their last one.


Forest -Tear paper for the leaves. Cut trunks, ground, etc. and glue.


Snow Storm -Swirl glue on colored paper and then rub 2 pieces of styrofoam together over the paper and then sprinkle glitter.



Cave... if your child is old enough they can draw the bear. Otherwise cut out one( you could let them color it)

We did one page per day over a week or 2. We read the book together each time before we made a new page. He's super proud of his book and sometimes we read it instead of the original!!! It's been hanging on the art display we made for his room... another super easy thing to make...string, clothes pins, and wooden cut outs from your local craft store. They sell them at Land of Nod and I've been meaning to make one of our own for a while and finally got around to it. This is a small version because of the space I had to put it in.




Okay - there's my little craft activity suggestion for what ever it's worth!!

Cohen turned 15 months old today!! Working on his post....

A few Upcoming "events"

We have several things on the horizon for the second half of this year.... some necessary "unfun" things, and some super fun things!! In chronological order...

1. Cohen's MRI has been scheduled for June 17th. This will be a head to spine MRI. We will meet with the anesthesiologist the week prior to discuss his risks and needs during the MRI. I am trying to not be too nervous but i am.

2. We are going to the beach for a week with my family and I can't wait. The boys had such a blast when we went down to Charleston and got to spend some time on the beach. They are going to be thrilled to be on it for a WHOLE WEEK. We are looking forward to some good times with my parents, my sister and her husband if he can get off work, and my niece!! Yea for vacations!!!

3. Chris will be going to Nicaragua later this summer on missions. I am so thrilled he is getting to do this. It's been a while since he has been able to make it to on a mission trip and he absolutely loves it. The last time he went was around 4 years ago when he went to Indonesia to do tsunami relief work. For those of you who don't personally know us, Chris and I went on a mission trip to Indonesia when we were in college and fell in love with it. We even toyed with going back full time at the time. That was not the plans God had for us but we certainly hold a place for Indonesia and foreign missions in our hearts. I can't wait to get out of the country myself..maybe in the next few years... If you would, you can began to pray for that team going to Nica, the work they will do there, and for financial support for all who are going.

4. We are taking Cort to Disney World!! This is such a splurge for us but we couldn't be more excited and we got a great deal!! And yes, I did just say Cort. It took a lot of thinking through but we have decided at this point to let Cohen stay with the grandparents. At his size and current developmental stage, we really think he'll have more fun with them and that he would enjoy Disney World a lot more a few years from now. It's been a very long year and a half and though Cort has handled it all so so well, he has taken the back seat on numerous, make that millions of occasions. Taking him to Disney World was something we were planning for last summer if Cohen had not miraculously lived as something to look forward to so to speak. We were thrilled to postpone our trip but are really excited about some good one on one time with our first born later this year!!!

5. And finally, we will be taking Cohen up to Delaware in November to be seen at the Nemours Children's clinic at Allfred I. Dupont Institiute. This is a program that has specialized experienced with people with dwarfism. While, they will not have specific experience with Cohen's type, since he's the only one in the US, we are thrilled to have some experts "get their hands on him" I can 't really say what are expectations are, I'm not sure that I have specific ones but we just feel like it's a good place to start and that at the very least we will start a relationship with the doctors there for further input as Cohen grows up.


In other news, Cohen has been doing the "seizure like" activity less and less often and we are so grateful for that. Just waiting in the MRI, and then see what the neurologist wants to do from there. He also had his speech evaluations and we will be starting speech as soon as Cohen's turn comes up on the waiting list. For now, we will cotreat with his OT so that we only have 2 sessions of therapy each week( PT, and then OT and Speech together) instead of 3. If we don't see progress with this then we will separate OT and speech at that point.

Chris grandfather is doing well. They did go through with the surgery, though they opted for a less evasive one. This made it a little less risky but also decreased the effectiveness of it most likely. He's recovering remarkably well but certainly isn't over all the hurdles. Chris was able to go down and spend the day with him and his family last week before the surgery. Please continue to pray for them.

Also, Cohen is all done with his bottles!! Yippee!! I have been really slow about dropping that last night time one with him. We didn't have any issues dropping it so I guess I probably could have done it sooner. Time just really flies. I can't believe he's almost 15 months old. I'm packing away so much baby stuff this week, the pump(i've been done with that since 12 months but it's been sitting in the corner of my bedroom:)), bottles, bottle warmers, and I just packed up a bunch of toys a few weeks ago that he had out grown.

It's true what they say, babies don't keep.

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!!!