Thank you for visiting. Braydon was diagnosed with Craniosynostosis at his 2 month check-up. I hope that reading his story, it will help out another family going through a similar situation. Also Ethan was diagnosed with Craniosynostosis at 1 week old.

Tuesday, July 7, 2015

On the Other Side (Again)

I know it's been awhile and I didn't post an update during Lauren's surgery, but everything went as smoothly as it could.  Surgery took a little bit longer than it did for the boys, but I'm glad they took their time with my baby.  She ended up with a blood transfusion, but so did her brothers.

The first night went surprisingly well in PICU.  The next day some coaches from the Virginia baseball team stopped by for a visit.  The pitching coach promised to get the boys a ball if we ended up attending a game.  Coach Karl came through on his promise as my dad was able to talk to him before the 1st championship game.  The Cavaliers lost that game but came back and won the 2nd two games to win the championship.

We got moved to the 5th floor that day as well.  Things started to decline, the swelling got worse and she stopped eating.  She was on morphine every 2-3 hours and we had a hard time keeping her comfortable.  This went on for a couple of days.  We were able to get her off the morphine on day 3 but she still wasn't eating.  So we needed to stay another night.  Later that day we finally got her to eat and the swelling started to go down.  I walked around with her and was finally able to nurse her as well.  We were able to go home on day 5.

Her brothers were very excited to have her home.  Things have been going well at home as well.  During my time off, we were able to go to the zoo a couple of times and went swimming with family as well.  She had her 2 week post op checkup and everything is on target.

We received back the results from Lauren's genetic testing that they did here locally.  And it turns out that Lauren has a duplication of the 12q15 or MDM2 gene.  While it's never been linked to craniosynostosis, we might have found the missing link.  The geneticist wasn't sure if she could get approval to run the same test on the rest of us, but since we were part of a genetic study, she thought they might be able to look at it.  We will follow up with genetics at our next clinic appointment.

I did call our pediatrician to see if he thought this could also be the cause in her issues with height and weight growth, but he wasn't concerned.  It was very nice of him to call after hours and offered to be a sounding board whenever I needed him.  It's very reassuring to have found such an awesome doctor who has done nothing best for our three munchkins.  It's not easy when one of your children have an issue, but when all three do it's nice to have a support system.  Hopefully we are closer to having an answer on how this happened.

If you are a family who is going through diagnosis, please follow me on Twitter (ebueltel81) or find me on Facebook (Erin Bueltel).  I hope that our journey could bring you some comfort.

Sunday, May 17, 2015

One Month To Go

We are officially one month out from surgery.  We are going to apologize in advance if we turn down social invitations from now until July.  Our first priority is keeping everyone healthy while balancing activities for the boys.  Kind of hard right now as both boys have summer colds :(.  As surgery gets closer we will keep our followers updated.

In other news, I have contacted the geneticist in California that won a $4 million grant.  He is very interested in having our family be a part of his study.  He told us that 90% of his families have 1 child with Cranio and the rest have 2.  But none of them with 3 or more.  It will be interesting to see what comes of it.

The kids are doing great except for their colds.  Braydon graduated from Pre-School but will move onto a Pre-K program next year.  He's reall excited to participate in the all-star basketball camp at the JCC this summer and work with his favorite Bluejays.  Maybe Dougie will make a guest appearance.  

Ethan is talking a lot more, forming complete sentences.  We've come a long way in the past couple of months.

Lauren is doing good, although I can tell she's starting to get headaches as she gets really agitated at night.  But when she smiles at you, my heart melts.  However she is such a daddy's girl.  But the boys are sure in love with their sissy.

I hope everyone gets the opportunity to enjoy their summer.  The start of summer will be a rough one for us, but we know there is light at the end of the tunnel.

Tuesday, March 24, 2015

Another Ride on the Cranio Roller Coaster

First off, let me apologize for not keeping up with the blog.  But life with 3 kids is rather hectic.  That's right, you did read that right.  Terry and I now have 3 children.  We are totally out numbered.  We found out we were pregnant last June.  In October, we found out that we were having a little girl.  Lauren Cynthia made her arrival on January 19, 2015.  Due to a questionable ultrasound and our family history, we knew right away by feeling her head that she indeed did have sagittal craniosynostosis.  X-Rays were taken the next day to confirm diagnosis.

We were already scheduled for the Craniofacial Clinic at Children's Hospital to meet with her surgeons and genetics.  Not a big deal, because this is our 3rd time doing this.  Pretty much all they did was feel her head and walk out of the room.  Because we pretty much know the drill.  The genetics counselor is going to see if there is anyone out there doing research on craniosynostosis to see if they want to study the kids.  Because it is really rare to have 3 children with the same thing and no other issues or family history.

We also got a Ct scan to determine if indeed her coronal sutures are fused as well because they aren't sure if they are or not even though x-Rays said that they were.  We also got  confirmation that her surgery will be June 19th at 11:00 am.

That's all I have for right now.  I really will try to get an update if we hear back from Genetics.

Saturday, September 7, 2013

Finally Moved to Intermediate Care

At about 5 o'clock we finally got a room up on the intermediate care floor.  So now we are accepting visitors if you want to come up, just text me and I can tell you the room number.  However we may get to go home tomorrow so there might not be much time to visit.  So go ahead and call first and I will let you know where we are at.

Ethan is doing a lot better.  He is eating like his normal self and his eyes aren't as swollen anymore.  He still has a lot of swelling in his head though.  Right now he's watching the Michigan Norte Dame game because we don't get the special Big Ten Network channels here.  So Terry facetimed his brother on our ipad and is watching the game over my phone.

I will try and post another update before we get home.

Still in ICU

Well, we are still in ICU thanks to an over crowded hospital.  Oh well, hopefully we will get to move today.  Ethan slept a lot better than he did last night.  Last night was pretty rough for us.  He was easily agitated and ended up needing a blood transfusion.  He is doing a lot better though and his blood work had come back clean.  However his eyes are swelling shut so I have a feeling we will be in here longer than we thought because of the swelling.  Thank you for your continued thoughts and prayers!

Friday, September 6, 2013

Into to the morning....

So we are technically into day 2 of our hospital stay as it is now after midnight.  Terry let me sleep for a couple of hours so I should be able to stay up for the rest of the night.  Ethan is such a trooper.  He already managed to get rid of his arterial line and one of his IVs.  Granted he did them himself and he probably shouldn't have lost them this quickly, but if it means I get to hold him sooner, I'll take it.

He has had 1 oz of Pedialyte and seems to be holding it down, so we will start giving him an ounce or two of breast milk.  Once he can keep that down, we can start Lortab and Tylenol as his pain medicine and that's one step closer to getting out of ICU and onto the regular floor.  Which also means we are a step closer in taking him home.

Terry and I can't tell you how much it means to us that our family and friends took their time to text, call or facebook post that they were thinking about us.  We truly felt your support and I think that's why it seemed to go so fast once we finally got into surgery.  Also I truly believe you guys provided the strength Ethan had while waiting for surgery.  He was barely fussy even though he hadn't gotten to eat for over 6 hours.  And if you can see, he rarely misses a meal.  :)

I will try and post another update once we get moved onto the regular floor.

Thursday, September 5, 2013

On the other side

We made it!  Ethan is getting situated in PICU!  It won't be long and I will have my baby boy by my side again!

Everyone keeps telling us how great he did!