Brentley Ehmann's Cranio Journey

I am a Tough Little Guy…Time to Cowboy Up!

Care Packages

So when our family was faced with this crazy cranio journey, I felt so lost, afraid and frustrated. I found an amazing support group  www.craniokids.org where I met so many families facing this same birth defect. It sincerely helped me get through it all. I knew what to prepare for and what to expect. I met many new friends from all over the world!  One amazing mommy from Nebraska sent our family a care package packed with goodies for the entire family for the big surgery day. Then another wonderful woman sent Brentley hand made hats and blankets. I was in shock that complete strangers cared so much.

So now that Brentley is all healed up and on the road to a perfect and normal life, I felt the need to pay it forward. I along with several other cranio mommies have been putting together care packages for families facing surgery. As of today I have sent out 10 packages that included the handmade hats and blankets, socks for mom and baby, bibs, teething toy, chap stick, mints, snacks, body wash, lotion, etc. Along with a note of encouragement and support. I feel so blessed to be able to do this.

I really want to continue this as long as possible. And I would also like to offer these care packages for people overseas. I know times are tough for everyone right now. But if there is anything you would like to donate for this project we would be GREATLY appreciative! Whether it be money for postage or products, hand made gifts or just letters of encouragement. You can send money to my paypal at summer@craniocarebears.org or if you would like to mail something please let me know and I’ll send you my address.

Together we can all “Pay it foward”! Thank you very much!

Sincerely,

Summer, Ryan, Braylee & Brentley Ehmann

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February 16, 2011 Posted by | Uncategorized | 2 Comments

Brentley is 7 mo old today and doing fantastic!

 

Our lil man is 7 months old today! He has recovered so well in just 5 weeks. The recovery was definately no picnic but now that we’re on the other side, it seems like it went fast. It seems like it all never happened. We thank God everyday for blessing us with such a beautiful happy baby and keeping us so strong through the whole ordeal. And for the fast and safe recovery.

“Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see”  Heb11.1

Since the surgery he can sit up perfectly. He hasn’t shown signs of wanting to crawl just yet but we are in no hurry. I remember wanting Braylee to crawl and walk so bad and now that we know Brentley is our last little baby…I’d like to keep it that way. lol

Since the surgery, he also seems to be just more alert and happier in general. He loves to laugh and giggle. He’s extremely tickelish and his favorite thing is for someone to just look at him and talk. His tongue has also healed nicely and he can now stick out his tongue! He even seems to have fun with this new ability. =)

Brentley got some pretty cool shirts. I think he likes all the attention he gets when we go anywhere. He’s turned into a big flirt! =) Go figure with Ryan as his daddy. lol

Chicks Dig Scars

 
This week we also went to the Denver Aquarium and had a blast! We saw tons of fish, shark and even a Tiger!
 

Denver Aquarium

Just wanted to update everyone on how well our lil man is doing! We are so happy and want to thank you all for your continued love and support!
Summer, Ryan, Braylee & Brentley
 

January 29, 2011 Posted by | Uncategorized | 2 Comments

At home recovering & Christmas

So Brentley is 10 days post-op today and we’ve been home for 1 week. It’s been a tough week we realize and really miss those nurses! =)

They sent us home with Ibruprofen, Tylenol and Oxycodone and a schedule of when to give each. Well let me tell you…Brentley HATES medicine! He tightens his lips and closes his jaw so you cannot get the syringe in his mouth. In the beginning, it was taking us almost 20 minutes to give him 4ml of Ibruprofen (his least favorite) and alot of screaming and tears. It was awful. Especially during the middle of the night when Braylee was next door trying to sleep. Ryan & I slept in his room for the first 3 nights home so we could be close to him. He was sleep trained before surgery and would sleep almost 12 hours but now he wakes up every 1.5-2 hours. It’s just like having a newborn again. Exhausting! We have since pretty much stopped all medicine and use Tylenol as a last resort if he acts like he’s in pain. Each night does get better and better however. Last night he actually did sleep for 7 hours straight so that was a huge relief! He had to go to the pediatritian yesterday for his 6-mo well baby check up. They checked his scar and recommended we put Mederma for kids on it to try to reduce the scar. He also had to get some of his immunizations. =( Poor baby! I felt horrible after all that he’s been through to again get poked 3 more times! AGHH He still has a couple more to get next week (we’re trying to break them up a little). Braylee has to go in next week too for her big 2-year appointment and a couple shots and I am NOT looking forward to that appointment. And I think I have to go alone which is going to be a handful.

So on another note. We had a FABULOUS Christmas! Santa came and visited the kids. He was on the roof Christmas morning and even walked by Braylee’s window! She was a little confused. haha Santa brought a play kitchen to Braylee and a rocking horse for Brentley. (Ryan insists he’s going to ride bucking horses one day…yea right!! haha)

 

 

 

 

Shirley, Ryan’s mom from Montana, was here from 12/17-12/27  and she was a HUGE help! She watched Braylee the whole time we were in the hospital and they had such a great time together. It was so nice having her here, expecially for Christmas. This year I over did the presents for Braylee as I found a bunch of deals online throughout the year. We opened presents litterally all day long and we finally gave up when she still had about 15 to go. The next day we finished but it was definately way too many gifts for her and she got bored.  I’m going to gather a bunch of toys she doesn’t use and donate them ASAP.

We hope you all had a wonderful Christmas as well!

So the swelling has gotten better & better every day. Here’s an updated picture of little Brentley. You can hardly see any swelling at all! And still no black eye! AMAZING! The doctors did a fabulous job!

 

Then a very sweet girl (Angela Combs) I met on Facebook sent these handmade hats for Brentley to wear to help protect his scar and keep him from scratching it. (Braylee loved them too).

 

We are just blown away at the outpour of love and support from not only our friends and family but complete strangers! Another wonderful cranio mom I met was Renee Wheeler who sent me a care package for the hospital and sent gifts for both kids which included handmade hair pins for Braylee and an elephant toy and ornament for Brentley. So incredibly sweet. And the best gift was all the prayers and well wishes. It was forever grateful & appreciated.

So we are officially “ON THE OTHER SIDE” as us cranio moms call it. =) And boy does it feel good!! Reflecting on our cranio journey seems very surreal now looking back. Did this all really happen? Is it really over?  Again we are reminded everyday as we look at our happy smiling baby boy that we are sooo incredibly lucky that his rare birth defect was completely treatable and now fixed. THANK YOU GOD!!

Ryan and I would like to thank each one of you for your love, support and prayers. We truly couldn’t have gone through all this will out each one of you. THANK YOU!!!

Today is the last day of year 2010 and I know it’s been a tough year for many of us. I truly hope that 2011 brings so much joy to each one of you and your families. Happy New Year everyone!

Sincerely,

Summer & Ryan

December 31, 2010 Posted by | Uncategorized | 1 Comment

Denver Childrens Hospital Released Brentley to go Home for Christmas

Quick update…we have be cleared to take Brentley home for christmas. He is doing so amazing. I will give you a full update later but for now i want to say thank you so much everyone for all the love and support. You were apart of making a miracle for my family come true.
Wooo Hoooo….THAT’S WHAT IM TALKING ABOUT

December 24, 2010 Posted by | Uncategorized | 3 Comments

Visiting Denver Childrens Hospital Opened My Eyes To Life’s Little Miracles

Denver Childrens Hospital is a Place of Little Miracles

Think your life is tough or unfair? Mad because you never get what you want? Are you rushing around everyday with your hair on fire trying to accomplish 3,000 things all at one time? When is the last time you slowed down time and took a look around at all the miracle around you? 

Here is a christmas gift to yourself…

    Take 30 seconds…look at your life and all the miracles around you. The fact you are healthy without serious illnesses, have your eye site, hearing, sense of taste, smell and feelings. Your mind and body is a complete miracle and the people in your lives are miracles. Somehow miracles happened to bring those people into your world to be your friends, neighbors or family members.  I am so grateful that you are reading this right now, it means a miracle in my life brought you to read this at this very moment. You see I own a private personal weight loss gym and have been working 18 to 20 hour days this year trying to achieve what I thought was the real achievement in life which was to build a fitness empire. Now each person has to have goals and dreams but in a life with cell phones, internet, email, text messages we tend to over look the little things, the special things, the miracles that come and go in a flash.

Ask yourself this question:

What miracle is in my life at this very moment that if it was taken away from me tomorrow I could never replace it or get it back the rest of my life?….Close your eyes for 30 seconds focus on this and imagine it being taken away.

     2 days ago my life was put on hold and I realized that the most precious gift in my life could possibly be taken away from me FOREVER!  The life of my son and the part that kept running through my head was how did I spend the last 6 month with him?  I was to busy with cell phones, email, internet, working and blah blah blah…Watch this video because this moment in life my heart stopped.

The nurse practionare told us the dangers of this surgery was “he may not wake up from surgery”, then she took him away…watch the good bye video.

How are you living your life? Fast, upset, grumpy, pissed off at the world? Is everything all about you and give me, me me. If so then your in a place that is unfullfilled and I have learned the greatest gift to ever live by is the gift of being greatful.  Yes, I know the last 3 days I have slept a total of 3 hours and sometimes things didn’t go my way, like inserting IV’s, drawing blood and doing things to my exact expections. However, even when other people didn’t do things right I was still GRATEFUL and thanked them for helping us. Right now as I am writing this journal I am holding his little hand as he is in the bed next to me sleeping peacefully. (Yes its difficult typing with one hand but I am grateful)

                                                            I focused on being so grateful that my son was alive

So Grateful for my son

      That is the secret to get yourself aligned with the universe to help you achieve all your wishes and dreams. Simply being greatful to others, even if they don’t deserve it. The problem with our society is we are constantly living in a state of reaction. Waiting around for others to do something and ready to respond with a positive or negative reaction. You must begin living in a world of action which means you are going to raise the standard of gratefullness to others especially to strangers.  

     Denver Childrens Hospital is a place of miracles, joy and happiness. They really go above and beyond to make your stay a fun, pleaseant journey. Thank you Denver Childrens Hospital, Doctor Winston, Doctor Ketch and the entire staff. We have experience an absolute miracle while we have been here. Although it has been the most difficult experience in our entire lives we really have learned alot about love, joy, happiness, life and the daily miracles.

 
Nurse Ellen was Awesome

     This has inspired me to do something totally different with my weight loss gyms. I am going to do a new 21 day “Fit Body Boot Camp” and donate the proceeds to a local charity to help children in Northern Colorado who are in need.

December 24, 2010 Posted by | Uncategorized | , | 3 Comments

4 Legged Santa Claus Visits Brentley at Denver Childrens Hospital After Cranio Surgery

     A 4 legged Santa Claus visited Brentley today while he was staying here at the Denver Childrens Hospital after cranio surgery. Yep he stolled in on all 4 legs waggin his tail and instead of bring a bag full of gifts he brought a wiggly tail and a lickin tongue. Brentley thought that was really cool since he has 2 little doggies at home who he loves.

Big Sister – Duke – Daisy

Denver Childrens Hospital is a place of miracles, joy and happiness. They really go above and beyond to make your stay a fun, pleaseant journey. Thank you Denver Childrens Hospital, Doctor Winston, Doctor Ketch and the entire staff. We have experience an absolute miracle while we have been here. Although it has been the most difficult experience in our entire lives we really have learned alot about love, joy, happiness, life and the daily miracles.

December 24, 2010 Posted by | Uncategorized | | 2 Comments

Second Night of Recovery After Cranio Surgery at Denver Childrens Hospital

 

      Ok by the end of day one which was the surgery, Summer, myself and especially Brentley were very exhausted and although the first night was very frightening, long and no sleep, the doctors were right when they said it was only going to get rougher before it got better.  Doctor Winston dropped by the room that morning to check on Brentley and he said things really looked great and for us to keep him hydrated and proped up as much as possible to allow the swelling to go down.

                
             Here is what doctor says looks good:
Cranio Surgery Denver Childrens Hospital
Little Eyes won’t open.

 

 Left Side

Right side
Top Stitches
     Late morning another doctor came in and removed the drain tube from the top of his head. This tube was freaky because every time he cried and his heart rate increased, blood would pump out of his head and into the drain tube. I guess what it does is relieves the pressure from his head so the head doesn’t swell from the build up of excess fluid.  Although it did serve a purpose we were very glad when they removed it from his head. 

Tube in head
     The second day after Cranio Surgery at Denver Childrens Hospital, well let me take a deep breath and sigh of relief that we made it through the night before I share the experience. Late morning of day two, he kicked 2 IV tubes out of his leg. and the nurses weren’t worried because they said if he would drink milk then the IV wasn’t needed. Well about noon Summer feed him some milk and then he took a nice long nap.
     3pm rolls around and Brentley woke up very fussy, irritable and crying. We tried feeding him again but he didn’t want to have anything to do with the bottle. Then the next thing was he must be in pain so the nurse brought in the medicine and fed him pain reliever which has mostly been Tylenol. She used a dropper to put it in his mouth, well at the time we didn’t know but they changed the flavors of meds to a cinnamon flavor. Which later we found out is the most horrible tasting and burns the back of the throat. Well just imagine what he did when the nurse put the meds in his mouth. He hated it with a passion and did everything possible to get him to take the pain relievers. Normally if you have a hard time getting kids to take them then they inject it into the IV which goes straight into the blood stream relieving all pain almost instantly. Well we didn’t have that option because he tore out the IV’s earlier that morning.  Knowing what I know now, I would have immediately requested them putting the IV back into his leg.  However, Summer insisted that they don’t because she HATES needles and they told us if we can keep him drinking breast milk then we didn’t need the IV. 

      Besides Brentley having cranio surgery he also had to have his tongue clipped because the thing underneath his tongue was too short and restricting the full movement of his tongue. Its called being Tongue Tied and can cause eating problems and speech problems later in life. If we hadn’t done this now,  it would involve another surgery and a trip to Denver Childrens Hospital later in life. Here is my best advice before taking your kids to the hospital. You know your kids wants, needs, desires, words, movements, cries, moans, snoring, and the list goes on.  The point of my story is remember the nurses see hundreds of new children all the time so they don’t know if your kids are acting out of the ordinary.

     We tried and tried and tried to get Brentley to breast feed or drink the bottle but he just refused to do it. WARNING SIGN: Normally he will chug down the milk like he is at a local county fair milk chugging contest so it should have been our first indication things weren’t right. In fact I am going to buy him a dairy cow that he can lead around and feed him when he gets hungry.  Ha Ha…

     Now the only 3 times he gets fussy is if he is hungry, tired or needs a diaper change. We just changed his diaper, the meds were kicking in and we were sure that he was hungry but why wouldn’t he eat?  We keep watching his movements everytime we tried feeding him and he was doing weird things with his mouth and tongue. Final it hit us, because the meds haven’t kicked in yet his tongue is really bothering him. So we got the clever idea to feed him with a dropper. Wooo Hoooo…that worked and we feed him a ton of milk and we were so relieved because by now it was 5 ish and he hadn’t ate for about 5 hours.  Just as we were celebrating the victory he puked everything including the meds. Ahhh horsesh!t…now we are in trouble!  We ordered the IV to be put back into his leg and by this point he has been poked so many times with needles that we didn’t want many more. We specifically told the nurse to “do it right” the first time, what I should of done was asked for the Master nurse in the building at inserting IV’s.  Long story short the nurse poked it into the only arm that hadn’t been poked 20x and she screwed it up. Poor Brentley cried so hard that his heart rate hit 220 and his head was leaking blood out of his stitches, he was very hungry and had no medication in his system for relieving pain.   After this we told the nurses to forget the IV because we were not going to poke him again.    We did give him more pain relievers to calm his pain but he was very hungry and dehydrated. Whenever in need or in doubt, call your Mom, so I did.  She is the kindest, most giving person in the world and right now she is taking care of our 2 year old daughter Braylee.  My mom is an EMT so I explained what was going on and asked what we needed to do. She insisted that we get an IV in Brentley to get him hydrated ASAP. We ordered an IV and this time the Master IV nurse arrived and spent about 20 mintues searching for an ideal vein.  She did it and it was so easy and painless that I am kicking myself for not asking for this lady 10 hours ago. Oh yeah I then asked if they had any different flavor of meds to feed him and the nurse replied, “oh yeah what flavor do you want”? We requested cherry flavored and then he had no problem consuming his meds. If you want the best things in life ask for the best and demand it without excepting anything less because….YOU DESERVE IT!  Wooo Hoooo … THATS WHAT IM TALKING ABOUT!

                                      We did something really fun things today at Denver Childrens Hospital

 Oh and Aunt Sierra came to stay and brought me a teddy bear…. She rocks me, feeds me, cuddles me, spoils me and loves me soooo much. She has her masters in speech pathology so she really takes care of me.   I LOVE MY AUNTIE!

Sierra bear

 Got a visit from a volunteer Santa Claus Doggie …

Cranio Surgery Denver Childrens Hospital 

Wagon Ride

 

 

Wagon Rider

 

        

                                              

 

 

 

 

December 23, 2010 Posted by | Uncategorized | , | 5 Comments

Our lil Sumo Wrestler

So far lil Brentley has gotten really swollen and they say it may get worse before it gets better.

 

It is so hard to see your baby look like this let me tell you.  The doctor did come in earlier and finally take the drain out. THANK GOD!! Now I will feel more comfortable holding him. That is once Ryan lets me. =) He’s been asleep in daddy’s arms for quite a while now. I hope he still remains “momma’s boy”!!  The lovely nurses are managing his pain really well now so we haven’t had any crying episodes lately. As I sit here and write this, I’m reminded of how lucky we are that Brentley’s rare condition was treatable. I’ve heard the helicopter fly in and out of here several times and it breaks my heart knowing that a child is in need somewhere. =( I do not know how all these nurses and doctors do their jobs. They sure our special because Lord knows I could never hold up. I want to cry everytime I walk up and down the halls. 

Here’s Brentley chewing on another toy they brought us. It’s a doggy puppet. He’s starting to return to his old cheeky self. I even got a smile and giggle out of him earlier. Yea! I know each passing hour will hopefully get better and better. Thanks again for everyones prayers!

XOXO

Summer & Ryan

December 22, 2010 Posted by | Uncategorized | 5 Comments

Prayer Request From Denver Childrens Hospital Chaplin Blesses Our Son

A Pastor from Denver Children’s Hospital  blessed our son today at 9:45am on December 22nd 2010 and after the night we had it was a real blessing to be reassured things would be ok.

Denver Childrens Hospital Pastor

All though a successful cranial surgery is the biggest challenge in this journey we are now focusing on overcoming the next challenge of recovery. The road ahead of us is for sure not an easy one as recovery can be very hard, scary and frustrating. Last night had to be the longest and most difficult night for Summer and I.  Considering the emotional drain we had starting at 5:00 am on Tuesday when we woke up and left our hotel http://www.aloft.com that was only five minutes away from the hospital. We spent the entire night with nurse visits about every 15 minutes who were checking on Brentley or performing some kind of test on the little guy. The hardest part was they had to get a blood sample which consisted of them poking his foot with a needle plus during all of this they accidentally pinched his back with the pliers which really hurt.  We spent hours trying to comfort him and get him to fall asleep and just about the time he did they came in for the blood test.  OHHHH….I think he cried for 30 minutes straight, so hard that he was coughing and gagging. We spent the next 30 minutes trying to get him to fall back asleep.  I swear it was but 20 minutes after we got him asleep the nurses came in again and said we have to draw blood again because the first time it cloted and it won’t work for the test.  URRRRR … the worse feeling in the entire world is watching your infant cry especially when they have a drain tube sticking out of the top of their head and everytime he gets upset his blood pressure rapidly increases and blood pumps out of his head through the drain tube and blood leaks out of the stitches. Luckily the second time they drew blood they got it from his finger and used a heating pad to warm up his finger before they poked him. Oh thank God because this time he cried just a little and then feel back asleep.

About 5am I realized I wasn’t going to get any sleep because of the frequent visits so I tossed in the towel and worked on my Fit Body Boot Camp launch for 2011  http://www.EducationalFitnessCenter.com Besides hospitals were not made for visitors to sleep over, Summer was sleeping on the sofa but she said it was harder than the tile floor.

denver childrens hospital cranio surgery

2 days of no sleep

Do be fooled by the photo…I am not sleeping, my eyes are so heavy that they are actually open but not much though. Denver Childrens Hospital visit has been challenging but I will say they really are amazing and saving children. Oh and a volunteer came in & gave Brentley a hand made blanket! Its so soft & he loves it!

December 22, 2010 Posted by | Uncategorized | , | 1 Comment

Cranial Surgery Leaves Scar but Our Son Now Looks Like a Normal Kid

Brentley’s head was very mis-shaped and the fact that other doctors in Dallas didn’t think he had Cranio is what had us so confused. Luckily Doctor Ketch and Doctor Winston here at Denver Childrens Hospital have decades of experience making them the masters in their field.  Doctor Winston said “I have been doing cranial surgery for 30 years and this is my first cranial surgery of this type. There is only 5 other reported cases in the world and that is why we are so thankful and blessed that this duo team of Winston / Ketch was comforting to us as young parents who never have experienced our kids being sick or hurt. The surgery was so precision and thought out that when Brentley grows hair you won’t be able to see the scar.

Now looking at this scar can be very terrifying, especially as a parent looking at your precious like kid who you have cradled, feed, rocked to sleep and done everything to be so cautious and gentle with from the moment you found out you were pregnant.  The road ahead for us is still going to be very challenging because he is now in what I think is the 2nd scariest part to the entire process, recovery from surgery.

However, so far our experience here at Denver Childrens Hospital has been so outstanding. Thank you Nurses and Staff! www.thechildrenshospital.org/

December 22, 2010 Posted by | Uncategorized | , , , , | 7 Comments