3 months Craniosynostosis Post Op (2nd surgery)

Mommy and MeWell it has been 3 months since lil Sweet Cheeks had his last and hopefully final surgery on Nov. 30, 2011. Thank God all has been well. We just took the 3 hour journey to St. Louis to the children's hospital for his 3 month post op check-up. We love this hospital and our doctor so that makes the trips much more bearable! Sweet Cheeks is a great little travel companion too. He is often times sleeping or singing :) Once we got in to see the doctor he said everything is healing well. Praise God! His plates and screw are dissolving like they are supposed to, but he also said that Sweet Cheeks has a "stubborn brain" lol. I must admit that this runs in our family. His head has always had the tendency to grow out the front and back more than the sides which made his head look very oblong. I used to refer to it as aerodynamic. Although he has had two surgeries to open up the sides (by creating spaces in the bone and allowing it to regrow to fill them in)  his brain still wants to grow the same directions. Soooo, I am really really hoping and praying that since he isn't growing as quickly now that it won't affect him as much and we will not have to go through a third surgery. He is still as cute as a little bug and makes me smile many times every day!! I have included some updated pictures of his progress. :) Until next time - count your blessings and remember we are only here on this Earth for a sliver of time and soon we will all fly away from all of our troubles an burdens to become heavenly creatures!!


The years of our life are seventy, or even by reason of strength eighty; yet their span is but toil and trouble; they are soon gone, and we fly away.Psalm 90:10

always smilin' :) My temples are still indented though :(

lookin good from the back

I don't think most people would even notice...I hope not anyway

not aerodynamic like it used to be...can't even see scar from the top

you can see the back is starting to grow out again and my flat little forehead that is also starting to grow out again. You can also see the weird way my hair grows now, but not bad and I think it will get better as he grows.

 

left side can't really see scar

Sweet Cheeks First Birthday Photo Session



My wonderful aunt shot some pictures for me for Sweet Cheeks first birthday. We got these gems in about a half hour session out in my front yard. Although none of these are touched up yet I am more than pleased!! Check her out at "Shoot Me" Photography.  Enjoy!

what's a lil boy without a baseball :)

had this lil diaper cover made on etsy sooo cute!



 

"one" just learned this :)



waving to mommy

  

this is his sock monkey that we did his party around

 

 

you can see how his forehead protrudes and the top of his head is pointed









Sweet Cheeks birthday and craniosynostosis appt

Hello all,
       I have been busier than a bee in a flower patch lately. I have been working my butt off in all areasof life: working, babysitting more, and sewing for custom orders, not to mention 1 husband, five kids, and a dog :). Needless to say I am totally exhausted. I wanted to inform of Sweet Cheeks updates:
       He turned one!!! Yay!! We threw a big outdoor sock monkey party for him at our campground because unlike the other kids I am very well aware how blessed we are to still have our little man in our lives. They all had parties too but this one was special to my heart because at one time we weren't sure what may happen and I realize that if he had been born anywhere else he may not be here right now. For his party, we made a color coordinating candy table. All the candy on it was red and browns to go with sock monkey colors (red hots, connamon disks, suckers, root beer barrels, twizzlers, etc) and I added some coke in glass bottles because they seem to fit the era and theme as well. I also made his monkey cake myself - I used a squre pan and then added a circle on top for the face and cupcakes along the sides for the ears and used the cut off top to make the cake flat for the hat and mouth. It turned out really cute! Tenderheart helped me make "Monkey Munchies" which is a cookie recipe in a quart jar to give out to guests and we put matching fabrics on the llids and tied them on with suede ties. It really ended up super cute although it was extrememly hot! He got to eat cake and ice cream and made a huge mess as every first birthday should be :) I will try to remember to attach some pics later.
       We also hit his six month post op date and so had a dr appt. Unfortunately the dr believes that we need to do a second surgery for the front of his head :(. The last one was only from his ears back and this one will be from his ears up. The measurments from right after surgery to now showed that his head has narrowed again since his last surgery and has also became more pronounced on his forehead. The best way to describe it is cro-magnon ish. We have to get the surgery in the next couple of months because if we wait til his head isn't growing as much they say he won't heal as well and the results won't be as nice. Please keep him inyour prayers!!
    Well I have a lot of other stuff going on but not time to talk now... it's off to work I go!!

4 months Post-Op Craniosynostosis Update

Today was Sweet Cheeks' 4 month check-up at the children's hospital. It takes us about 2.5 hours to get there so we had to get up at 5 to have time to get ready and nurse him before we left. I was blessed enough to have an appointment the same day as my cousin's baby (he has gastrointestinal problems) thirty minutes apart so we could ride together. This really helps especially at today's gas prices!! The doctor was a little concerned with his protruding forehead still, but to me he looks wonderful and I am quite sure we will not opt for surgery unless it is a brain issue that could cause harm not just merely cosmetic. I am extremely happy to say that he is doing amazingly well and is progressing. He now has enough hair to cover up his scar so it isn't hardly noticeable, he is starting to army crawl, and is catching up with his peers. I believe the only reason he was a little lacking is because we held him so much afraid he may hurt his head (or his siblings hurt it for him). Now he is terrifically spoiled, never sleeps in his own bed, and wants to be held all the time! This is hard to do with four other kiddos biding for your attention, but we are working it out. I thank God we have a joyful, chubby, happy and healthy little man that we are sooo very privileged to get the opportunity to raise. What a awesome gift!

Here are some literal "Head Shots" lol:

top view of his still oval shape

just a cute smile :)

side view that shows forehead protrusion

another side view

"I'm spoiled and wanna be held" view

forehead protrusion

another cute smile!

front view- sides go out a lil at top

trying to get a top view lol

Behold, children are a heritage from the LORD, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. Blessed is the man who fills his quiver with them! He shall not be put to shame when he speaks with his enemies in the gate.  Psalms 127:3-5

Sweet Cheeks' Craniosynostosis Update

We are coming upon ten weeks since Sweet Cheeks has had his surgery and I have noticed a great improvement. His head is by no means perfect but is perfect to me :) His hair grew back to what he had before surgery- I was so sad to see it all cut off it took so long to get any. He has rounded out and is supposed to look much better as his head grows. We will go back in July to see his surgeon for a check up. This is a pictorial of his journey up until now.

we loved him passionately no matter what!

Before surgery:

very aerodynamic!

day before surgery

became more oval as he grew

few weeks old- notice bump in back

bump grew as he did

look at those cheeks

last day at hospital

During 10 day hospital stay:

we loved all the nurses at Cardinal Glennon! Always managed a smile for us no matter how much pain :)

very swollen day after surgery

right after surgery, right before surgery, and without bandages

Daddy checks me out

2 week checkup with our favorite dr

After surgery- 10 weeks out:

front of head is still bulbous

still smilin

head is a lil bumpy still

much more round and less oval

bump is totally gone!

hopefully everything will cont to improve

 
 We are thanking God every day for our little boy! He is soooo sweet and such a precious blessing!! Our family would not be the same without him! We love you Sweet Cheeks!!!!

Now therefore, our God, we thank You, and praise Your glorious name ... 1 Chron 29:13

Craniosynostosis,,,,Proof of God's Mercy and His Grace

Hello again,
Since I vaguely covered my son's craniosynostosis I thought I would address it today. When Sweet Cheeks was born his head was oblong and also had an odd bump straight out of the back of it which after questioning the doctor we chalked up to going through the birth canal and that it would eventually correct itself. After a few days at he hospital and his head shape not changing I again questioned the doctor and was again reassured that it would correct itself. We headed home happily and spoiled our son as all new parents do. We also have a tremendously large family that helps us :)
Our next appointment after a brief hospital stay because of jaundice I had the doctor check his head again just to make sure he still thought it was okay. He informed us that he thought his head would just be a little odd shaped and that since he was a boy it wouldn't affect too much. Relieved once again to be reassured that it was only cosmetic I hurried home to share the news with the fam.
Sweet Cheeks two month check came blasting by I wondered where the time had gone. I got us all packed up and headed to our appointment with my eldest daughter Darling and my oldest son Sensitive. After a check up and some nasty shots the doctor asked if I had any questions and I said offhandedly that he could check his head shape and see if he thought it was changing. He felt of his head for what seemed to me to be an abnormal amount of time and then turned to me and said, "Do you think you can go straight to the hospital for x-rays?" which was NOT the way to keep me calm. After a brief internal (because I had too many kids with me to do the real thing) anxiety attack I asked him what was wrong and he explained that his soft spot seemed to be completely closed and that if his other sutures had followed suit he potentially could have limited space for his brain to grow and that we need to check it out immediately and possibly need to go to Children's Hospital 3 hours away in the next couple days. Deep Breaths!!
We went and had x-rays and headed home to wait for the results which we didn't get til the next day. You would think with all this technology that we have we wouldn't have to wait for tests results that make you a nervous wreck for long amounts of time, but that is another story. We received the results the next day that his sagittal suture was closed and that two more were narrow (you have 5 in all and the more that are closed the worse your prognosis). Off to Children's Hospital and after a six hour round trip and four hours in the waiting room we found out that surgery was the only cure.
Fast forward to two months later after several more appts at Children's Hospital and we go in for surgery (on Valentine's Day 2010) and relinquish our tiny little 5 mos old baby into the hands of strangers for a twelve hour surgery!! Our hearts were completely devastated. Thank God for all the support and prayers that we had or we never would have made it through that time. After we finally heard he was out of surgery it was another hour before we could see him. He was sooo swollen and in sooo much pain it was the hardest thing I ever had to see. He wasn't allowed to eat for another twenty-four hours and I could not even hold him because iv tubes were coming out of every appendage and it was too dangerous because one might come out and it was directly into an artery and he would bleed out. I finally got to hold my little man on the second day!! I cannot explain how good it felt to hold him in my arms. After kicking or pulling out 4 ivs and having to have them put back in and a total of ten days we were finally released armed with some heavy antibiotics. I missed all my other babies soo much we were ecstatic to get to see them and just spend time with them. It is funny how it is just the mundane things in life that we really missed.
Anyway, after a really long and complicated story I will say goodbye for now and I hope that our story will someday benefit another family who has to go through this terrible surgery. Feel free to contact me and ask any questions I would be more than willing to help you out with my limited knowledge.