CT Scan photos

I started this blog for myself to keep track of all that was going on, and to also keep family and friends updated on Gabrielle. Now my main focus is to help other families dealing with craniosynostosis. Over the past few years I have been contacted by several other mothers who have children with craniosynostosis. When I hear from them I want to reach through the screen and give them a big hug! I met a wonderful mother through Gabby's journey who took me under her wing and provided me with all the information and support I needed to get through the trying times (thanks Cindy!). I strongly believe that once you go through something like this and experience those wonderful people out there, it is then your turn to give back. I hope that this blog can help provide information and an honest view of one little girl's journey through craniosynostosis and be helpful to those looking for information.

I was debating about ordering Gabby's CT Scans to post some pictures. I didn't know if it would be to graphic for some, but my purpose is to educate so I am going for it. I requested the CT scans and they arrived in my mailbox yesterday. Now I can share what her skull looked like one year out, and more currently, just as it appeared three days ago at her 2 year check up. Remember that a skull of a child this age should not have any open areas anymore. Those that Gabby has were created from expanding her skull during her surgery.

I am amazed by what our bodies can do. I hope you are too!

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The first photo is from a year ago. When you look on the second one you can see all the screw holes have healed and the opening on the front of her skull is definitely getting smaller. You can see that the area on the top of her head on the left is healing well too.

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This is the large area on the right hand side of her head where Dr. Jensen moved her skull out the most. The smaller areas are filling in, but the large one has a ways to go. Dr. Jensen said that the brain has to continue to grow to better fill in the space that was created. He believes it is the outermost layer of the brain, the dura, that helps contribute to the bone growth (if I understood him correctly).

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Also healing nicely!

If you are a family going through craniosynostosis and would like to chat, please feel free to email me at jodi.danen@yahoo.com.

Two Year Anniversary!!

My beautiful daughter is celebrating her two year anniversary of her surgery to correct her coronal synostosis today! She is the bravest little girl I know. Gabby has the most spunky personality and always keeps us on our toes! She was born with this personality for a reason I believe, to help her have the drive to heal and never let anything get in her way.

What is coronal synostosis you ask? Here is a definition:

The coronal sutures begin at the ear and continue superiorly to the top of the skull to meet the sagittal suture. When one suture is fused, the forehead on that side is flattened and swept back with the eye in its socket. The surgical correction depends on whether one or both sutures are involved. When one suture is fused, it is removed and the forehead and brow reshaped and brought forward to match the other side. In addition, the cheek is also brought forward to reposition the eye socket.



We had Gabby's two year appointment at Children's Hospital of Wisconsin yesterday. She had to have another CT scan done and a visit with Dr. Jensen. I tried to prepare her to lay still for the scan, but that only resulted in tears. Once there, the nurses also tried to get her to lay still, but there was no chance of that. They tried Versed, a drug to help relax her. This resulted in a child that acted a bit like she was drunk. Not a great way to see your child. We tried the scan again, but by the time they had her strapped in and ready to go, she realized what was going on and she wasn't going to let that happen. So the needle had to come out and they gave her an IV to put her out. She fought that tooth and nail as well. They had to give her three doses of the meds before she gave in. Poor baby. After waking up from all this we had one horribly crabby child on our hands. I guess the Versed is to blame for that. Gabby certainly has her moments, but I have never seen her like this! She was throwing toys, scratching, and even biting her brother. She was a little devil! She somehow was ok for at least the first part of our visit with Dr. Jensen so he could do his measurements.

The results from the CT scan were good. It is amazing to see all the repair that is occurring on her skull. We got to see the scans from last year compared to this year. Most all of the screw holes are now filled in and a bunch of the open areas on the top of her skull and the left side are filling in a bit. The large area on the right side did not have as much growth, but I guess it is not something to be concerned about right now. Good news! Even better news is that next year she doesn't have to have a CT scan done! She will just have to go back for a visit with Dr. Jensen. He did say that she has had a bit of retrusion of her forehead where the correction was made, but said that in person it looks better than on the scan. I guess this is to be expected, but it should not get any worse. I pray that she never has to have anything else done and that she continues to grow properly!



With that behind us, Gabby is looking forward to her 3rd birthday coming in June. She has been talking about her birthday for months now, and I think it is mainly because she gets a cake. She is talking up a storm and has the attitude of a 13 year old. She now knows about her surgery and uses it to her advantage constantly these days. If you touch her the wrong way she will not hesitate to inform you to watch out- she had surgery on her head! She has no clue what that means, but that doesn't matter to her.

Here in Wisconsin, spring has not come yet. Hopefully now that it is April it will arrive soon!


Splashing in the mud in Michigan with Nora


Making snowmen. Gabby insisted on her "little tiny snowman".

Fun filled May

Starting May off by planting some flowers!

May in my household was quite the month! I have to say I got very spoiled this month. I am a full time stay at home mom, and for those of you out there who also stay home all day, every day, with your kiddo's knows that we are a blessed and also very challenged group of people;) I love it, but it is far more of a challenge than I could have ever imagined. That said, my wonderful hubby takes over this role some weekends so I can have some me time with my fantasic friends. This month I got a double dose of time away. It was great and very rejuvinating.

My first weekend away was a girls trip to Chicago to shop and go out and do lots of girl talk with no children or husbands around. I am so lucky to have the great group of friends I have found. They make staying home so much more fun and I am so blessed to have them all in my life! Love you girls;)


May 9th we celebrated Alex's 4th birthday! I cannot believe he is 4 already. Time is passing by so quickly. We had his first "friend" party this year with one of his best buddy's, Tate. Tate is also the son of one of my very dearest friends in the world, Melissa, and he turned 4 three days before Alex. We planned an outdoor party and of course it was freezing cold that day and sprinkling. Luckily, 4 year olds don't care how cold out it is and all 16 of them had a blast.


We also had a family birthday party. I usually make the cakes for the kids birthdays because I like making them and decorating them. This year though, I decided to forgo the making of the cake because I knew I wouldn't have the time to do it with two parties going on. A women in my playgroup used to be a pastry chef and does lots of cakes for others in the group so I went to her. She did a fantastic job on making Alex a "gator" for his cake. It was adorable. Things turned bad after my husband brought in the cupcakes to go with the cake from the car and the dog jumped into the car and took a big ol' bite out of the cake!! Ahhh!! I was so upset! How was I supposed to serve a cake my dog just bit into? I was franticly thinking ok, I could fix this, but we were heading out the door for the other party. My quick thinking hubby took the cake to a bakery in town which luckily had the cake decorator there and she fixed it right up for us. You couldn't even tell the dog got the cake. Sadie (the dog) thank God took her bite NOT from the Gator side, but from the front end. And NO we didn't serve the cake to the guests. We had plenty of cupcakes and Alex never knew that the dog got his cake... But it was a funny story to tell in the end.

The next interesting part of May was that Alex decided to give Gabby a "hair cut". Ugh. Yes, he got out his little crafting scissors and started chopping away. I always wondered how something like this could happen without someone knowing, and now I know. I was making dinner and thought they were both watching a cartoon and playing with their toys. Nope. Walked into the living room to find lots of locks of hair all over the carpet. Gabby was all smiles and couldn't have cared less. She had her hair up in a pony on top of her head and Alex didn't chop the whole thing off, just took a cut here and there out of it. There was more hair piled up in the front room in the house. I got her into get a proper hair cut the next morning, but they could only cut the back to make it as even as they could without cutting it all off. Most people don't really notice it, but if you really look at her it is so uneven in the back and in one section almost all cut off. That boy. I don't know what goes on in his head sometimes! For his sake though, I did get a haircut myself the day before and he said that Gabby needed short hair like me. My hair is not really that short Alex!

After all that drama I got to go on my second vacation of the month. (I told you I was spoiled this month!) Two of my best friends from high school and I about every other year get together and go somewhere. In the past it has been to visit one of them in Boston and then the other time visiting the otherone in NYC. It was my turn to pick this year and I choose Napa Valley. I have always wanted to go there. Luckily so did they. It took about a year for the trip to finally come together, but it was worth the wait. We stayed in Calistoga and spent our time tasting wine and eating at some of the best resturaunts I have been too. It was a great trip, but when I got home I was so happy to see my babies and stay home for awhile. Which is good since I don't know if Mark will agree to let me go again anytime soon... :)

One Year Post Op!!

Today marks Gabby's one year anniversary of her surgery. I cannot believe it has been a year already. Time sure is flying by. Today we also had her one year appointment with Dr. Jensen. She had to have another CT scan done to see the progression of her skull. I thought that she would just be able to get the oral sedation, but she weighed to much for it. That was a bummer. I was so hoping to avoid her having to be poked. She did as well as any child would when they are being held down and having a needle shoved into their arm. At least they did it pretty quickly and only had to try once.

We got to see the scans from last year compaired to this year and it was amazing. Looking at her you can obviously tell a big difference, but looking at the scans you can really see how much her bones were corrected. She has some large areas still in 3 spots on her skull that have gaps. Dr. Jensen said this was expected and that over then next couple of years he would monitor that the space was getting smaller, and bone was filling in. If over time this was not happening, then he would have to go in and do some work to fix this.

We were cleared for another year. She will have to go through the same routine, but they said by 2 1/2 yrs sometimes the kiddos don't need to be sedated, they will just hold still on their own. Here's to hoping! We are so, so happy today that we are a year out. I am relieved that after all of Gabby's falls, bumps, and bruises to her head (and there were many of them!) she is just fine. Dr. Jensen even reviewed the part of the CT scan that is of her brain. I was telling him how clutzy she is so he went to look at that to make sure all was good there. It was and that made me feel better:)

On another great note, my nephew, Owen, was born March 19th. He was born with absolutely nothing wrong with him!! He is just perfect and my whole family is thrilled!




We have a lot of fun activities coming up around here. Both Alex and Gabby's birthdays are coming up. I am heading to Napa Valley with some girlfriends I don't get to see very often, and Mark is heading out on a trip to Ireland. Alex is going to turn 4 and I cannot believe it. He is really turning into a little man. The things he says sometime just crack me up. However, he still can through a fit with the best of them. I am certainly looking forward to summer and spending as much time outside as possible!

We have decided to sell our house, and have put it on the market over the past month. We have been eyeing up a particular lot, closer to town that we are now, ever since we bought our house. The price came down enough to make up our minds to move. We are currently finishing up our house plans and are excited to begin the building process some time soon. Should make for an interesting summer!



Happy Easter!!

Happy New Year!

The Blizzard that left us with 14'' of snow

I cannot believe how quickly time passes. Last time I wrote was in October. That seems like forever ago already! Some great things are going on in the Craniosynostosis area. The CAPPS people are working really hard at getting the word out about craniosynostosis and also distributing brochures to pediatricians through out the country to better educate themselves and their patients on what Craniosynostosis is. I find myself "head picking" lots of kids these days. I have not gotten up the courage to actually say anything about the things I see, so I don't know if that is good or bad. There are just some things you can see on little heads of some kids that really look like they fall into one of the Cranio area's, but if the parent doesn't seem to notice, who am I to say? Each time I see that (which has not been that often) I always say a little prayer that I am wrong.

Back in November Gabby ended up getting ear tubes placed. It was the easiest thing ever. The whole process, once she got to the OR, was probably 10 minutes tops. I wish we would have done it sooner. Our ENT (whom I have to say is wonderful!) said that she had this paste like fluid behind both ear drums and that he had a hard time suctioning it out. Pleasant, I know. She had a hearing test done prior to the surgery and was a bit below where she should have been. The hearing test was repeated several weeks after the surgery and she was hearing perfectly! Yeah! I have to say her speech picked up a lot once she could hear better. Anyone who knows her knows that she is very chatty and always has been, but now we get to hear lots of words in there too:)
She finally has enough hair for pigtails! YEAH!

Christmas was exciting this year. Alex is now 3 1/2 and was totally into Santa. I may have been just as excited about Christmas as he was this year! Seeing it through the eyes of a child is simply irreplaceable. It was so fun watching them open all their toys and seeing the excitement in Alex's eyes when he realized Santa had brought him exactly what he has asked for- a CD player and a snow ball maker. Yup, a snowball maker. The funny thing is that is actually works really good!


Beat after a morning of gift opening!

Mark and I were really lucky this year to be able to get out of town for 4 nights the week before Christmas. We headed down to sunny Mexico with 14 friends. It was great to get to hang out with friends we really don't get to see that often. It was also fun to spend uninterrupted time with those friends that we do see. We had a blast and it was nice having a tan for Christmas! A big thank you goes out to Mark's sisters for helping us out and watching the kids!!



There has been some news that has caused lots of worry in my family, but I am sure is just another blessing in disguise. My sister is expecting my nephew, Owen, in February. They have found out that he has skeletal dysplasia. It has been challenging news, but Owen has been blessed with a wonderful mother and father and a huge family here to help him along the way. Please keep them all in your prayers. My sister just started a blog about their journey. If you would like to follow Owen on his journey you can find them at http://owensabor.blogspot.com.

That's all for now! Enjoy the photos!

Covered in applesauce

Our princess:)

October

Gabby and I would like to thank everyone who was so generous and donated towards the Briggs and Al's Walk for Children's Hospital! We were able to donate $650 dollars to the hospital! YEAH! I found out that we were able to designate where the money went so it should be going to the Craniofacial Department. Gabby did great on during the walk. She got a bit antsy at times, but we survived the cold!

We were able to spend the weekend with my sister Dawn in Milwaukee. It was just a girls weekend as Mark and Alex stayed home. Dawn's cat Petey was not so thrilled about a one year old in the house, but Gabby was thrilled he was there:) We were able to visit one of my good friends, Heather, and go for dinner. Gabby actually did really well at the restaurant to so that was helpful.

When we got back on Sunday we headed over to the Pumpkin Patch to get some pumpkins. Last year Gabby was to small to thoroughly enjoy the pumpkins. This year was different! She and Alex had a great time! Here are some pictures from our visit.





and still more pictures:)







Happy October!!

Children's Hospital Walk!

So summer has come to an end. I cannot believe how quickly it went by! Gabby is approaching her 6 month post op date already! She is doing fantastic! She started walking early this summer and now is trying to keep up with her brother. She is babbling like always, but is now able to say a few words. She loves our dog, Sadie, and cannot get enough of her. It is fun to see her personality shining through. She is getting to the age tantrums and can through them with the best:) She is a big stuffed animal fan and when we go to stores, or even the library where there are stuffed animals she goes nuts. It is entertaining some times, but keeping her in a shopping cart can be a challenge.

We have been dealing with another round of double ear infections that won't go away. This time though, she has learned to clench her jaw and refused to take the medications. It was definately a challenge, but we got some in her eventually. Her doctor is now just watching because there is still fluid in both of her ears. If this continues we will be going the ear tube route. Gabby is kind of clutzy in walking- she trips a lot. Her doctor and I think it may be related to her ears. I hope this all goes away soon!

We had an appointment with the pediatric opthamologist a few weeks ago. I have not noticed Gabby's eye wandering like it was before her surgery. Dr. Ruttum agreed. She was cleared for another year. Yeah!

Gabby and I are going to be doing the Briggs and Al's Walk for Children's Hospital this year! I wanted to do something to try to give back to this fantastic hospital system we have here in Wisconsin. The money raised this year goes to the west tower addition. This addition opened while Gabby was an inpatient. The nurses raved about it. While we were their there was no room for Mark and I to stay in Gabby's room. We slept on the floor or tiny pull out for the 4 nights she was there. Now they made the rooms more geared toward having parents stay. They have added different PICU sections. If I remember correctly what I was told they would have a certain number of beds dedicated to neuro, heart, etc so that the scheduling would be smoother and with much more space to accomodate more children. If you remember, Gabby got bumped from surgery the first time around because there were no PICU beds available that day. They didn't have space for any children who came in with emergencies overnight. So the patients who could wait were bumped. This should not happen anymore. Anyway, I am trying to raise money for this addition. 100% of the donations go directly to this. If you are interested in donating, even $5, visit our website at: http://www.firstgiving.com/jodidanen (you may need to copy and paste). Thanks in advance!!