Nathan's surgery is January 8, 2010! I'm so happy that the date has finally been set and that it will be before his birthday!
Wednesday, December 16, 2009
Tuesday, December 15, 2009
Our visit with the Neurosurgeon and the plastic surgeon
We went to see the surgeons that will be operating on Nathan last Tuesday. Dr. Dillustro talked to us about what craniosynostosis is and the treatment for it. He used some big words and then dumbed it down for us. LOL He showed us the CT scan pictures on his computer and it was very obvious that his sutures were infact closed up. He confirmed to us that they were already fused when he was born and it was NOT something that happened during labor. He referred to Nathan as "deformed". My initial thought after hearing that was "how rude, I don't know that I like this guy at all". Then he explained to us that they need to use that word because when an insurance company sees "plastic surgeon" on the bill they write it off as cosmetic and this is most definately NOT cosmetic.
Dr. Dillustro assured us that he has been doing this for over 25 years and has done thousands of these surgeries. He walked us through the procedure. (If you would like to know the nice version, click here. If you would like to know the more detailed version, click here.) The surgery is about 4-5 hours long and he will be heavily sedated. After the surgery is over he will be in the PICU (Pediatric Intensive Care Unit) for 1-2 days and then he will be moved to the regular care floor. Dr. Dillustro told us to expect significant swelling of the face for a few days and that minor swelling can last even a couple weeks. He said we will notice a difference in his head shape right away.
After meeting Dr. Dillustro, he introduced us to Dr. Magee. Dr. Magee is the plastic surgeon that will be taking care of Nathan. He is a experienced surgeon. He and his wife co-founded Operation Smile over 25 years ago. They operate on needy children in foreign countries. Mainly they fix cleft pallets and other craniofacial deformities. I feel confident in his work.
We are still waiting for a surgery date. On Tuesday we were told we should know in 2-3 days. Well now it has been 5 days. My husband has been very busy harassing them and has even called some of the secretaries himself to find out the doctor's surgery schedules. As of now we are waiting/hoping Dr. Magee will open another day for surgery. He only has two so far. One day in January and one day in March. I'd really like to get the January date since it is best if the surgery is done before Nathan's first birthday. All of this is out of our hands and we just pray we get the day that is best for Nathan.
Keep my little dude in your thoughts and prayers and I will continue to update as I find out more.
Posted by Jaime at 7:35 PM 0 comments
Labels: craniosynostosis
Monday, December 7, 2009
New house, and the day our lives changed
It has been quite a while since I last updated here.I believe the last update was in September. Since then, we found, bought and moved into our new house! We found a 3 bedroom 2 bath house that was perfect for our family! When we first saw the house it was naked. Litterally! It was in the middle of a complete renovation! There was no paint, no flooring, no cabinets and no windows! I'm going ot try a new way of sharing photos with you. Here are pictures of our naked house and pictures of it finished.
Nathan is growing like a weed. He is scooting along now and saying mamma and dadda. He is the happiest little boy ever! He had an appointment with his pediatrician for his routine 9 month appointment. He weighed in at 19 pounds and 27 inches long! She asked me if there was anything I was concerned about or had any questions. I asked her again about the ridge that he has down the middle of his skull still. At a previous appointment we had discussed this and the pediatrician decided we would "watch it" and that he would "grow out of it". She looked at his head, felt his ridge and asked me if his head looked funny to me. I told her it wasn't round and that his temple are sunken in. That's when everything changed. She decided she wanted to get a CT scan done on his head and see what she could see and the nurse would call me to let me know when the appointment at the hospital was. I left that appointment more confused and worried than ever. It was just me and the kids and I drove home as quickly as possible becasue I knew I had to do some research. The kids went off to nap time and I went off to my computer. After hours of reading I found out what should have been diagnosed 9 months ago.Our appointment was set for Tuesday, December 1st. While the week slowly passed, we celebrated Thanksgiving twice and had a blast but the whole time all I could think about was what might be and the CT scan ahead. The night before we had to fast Nathan since he was being sedated. I wasn't sure how well he would do with not eating. I woke him up at 3:45am for his last bottle until noon the next day. Finally Tuesday arrived. My aunt came over to watch Brian since children under 18 who aren't patients aren't allowed at the Children's Hospital becasue of H1N1. We got there at 9:30. We were taken back to the CT area so that they could sedate Nathan. The scan they were doing is a 3D reconstructive scan. It requires them to be completly still. They tried 3 times to get the IV in him and kept missing.
They used this special light under his arm to get the veins to light up. It was a pretty cool tool! They finally called in the IV Specialist Team. She missed the first time and got it the second time. Poor Nathan cried and cried but was a happy little dude once they all left! He's a trooper.
After waiting a little while they took us off to the CT room. They would only let one of us go back with Nathan while they sedated him. They laid him down on the CT bed and turned on a projector on the ceiling for him to look at. It was pictures of stars and the moon. They gave him the meds and it put him in a zombie like state. They don't make him sleep just make him still. Once he was zoned out they made me leave. It was the longest walk of 10 feet ever. I sat in teh waiting room for litterally about 90 seconds before the doctor came to get me and tell me it was all over. 30 minutes of needle pricking for 90 seconds of stillness. When I got back to him, he was laying on his side still zoned out. His eyes were open but he wasn't following anything or reacting all all. He was really floppy and had no control. The nurse said he'll come around shortly and he can have some pedialyte to drink. She went over the papers with me and he started to snap out of it. He drank a whole bottle of pedialyte and explained to me that he would probably sleep for 4-6 hours that afternoon and the effects of the drug would be with him for 4-12 hours. We were discharged and were sent home to wait for 12 hours to 3 days for the results. Natha snapped out of his zombie state in just about 1 hour! He acted completely normal for the rest of the day. That gave me high hopes for any future recovery.
I called the pediatricians office that afternoon and was told they would call me first thing in the morning. Around 9:15 the phone rang! Of course it rang about 4 times before that and every time I nearly jumped out of my skin every time. But THE call came. The pediatrician called and said that Nathan had Craniosynostosis. It is just what I thought he had. What is that you might be wondering.
What is Craniosynostosis? In an infant, the skull is not a solid piece of bone, but several boney plates separated by fibrous sutures. These sutures allow room for growth as an infant develops, and will eventually fuse to form a solid skull. Craniosynostosis is a condition in which one or more of these sutures fuse prematurely, causing restricted skull and brain growth. The result is an abnormally shaped head, or in severe cases, increased pressure on the brain. It is often sporadic with unknown cause, but can sometimes be linked a genetic syndrome. A physician’s examination as well as X-rays and/or a CT scan are required in order to properly diagnose craniosynostosis.
So what do they do to fix this? Surgery. Plain and simple. I have found a great support board called Cranio Kids and it has tons of other families going through the exact same thing. They are great at answering any questions. Even the silly ones. We meet with a Neurosurgeon and a plastic surgeon tomorrow to set this all up and to ask my 71 million questions. I will know more tomorrow hopefully! Until then keep Nathan in your thoughts and prayers!
Oh and while all of this has happened, this weekend Dean has been sick, Brian got strep throat, and Nathan popped a 102 fever.Everyone is well now except Dean. I'll write more tomorrow. BYE!
Posted by Jaime at 12:10 PM 0 comments
Labels: craniosynostosis
Wednesday, September 16, 2009
Maybe time for an update?
I seem to start every post with "So it's been awhile" and again, it's been awhile. Some of you may know that I started a couponing blog recently. You can check it out here.
The boys are doing great. Nathan turned 6 months old on August 24th and was a whopping 18 pounds 10 ounces! He is still at the top of the charts for everything and is following his curve just fine. He's just going ot be a big boy! Developmentally he is great. He is sitting up on his own pretty much. I still don't leave him by himself sitting since occasionally he does flop over. He seems to have no interest in crawling. He'd rather sit and watch his brother. Unlike Brian, he's really calm and talkative, whereas Brian was active and less talkative. Nathan will be chatting along with Brian before I know it!
Brian will be 21 months old tomorrow! i cna't believe that either! He has a lot of new words and can repeat almost anything you say. That's not a problem at home since we don't say bad words, but the public is another story! Like the guy blarring his music in the car next to us! Or mommy yelling "move lady!" when she's in a hurry. I better start watching it. He has learned a few letters. He can tell you what "H" says and what "B" says! That's my smart little boy!
Dean's doing great too. He reenlisted in mid-August for another 4 years in the Navy. He's more than ready for a break from work.
Posted by Jaime at 4:22 PM 0 comments
Saturday, August 1, 2009
Long update with a month worth to catch up on!
Where to start? It's been a really long time. Sorry. Life with a 5 month old and a 19 month old is getting harder and harder. The days of leaving Nathan on the couch while Brian ate lunch is past us and leaving Brian. So I guess I should catch you all up some!
We also took a trip to Busch Gardens. We just took Brian with us and left Nathan at Grandma's house. Brian had a blast! It was really hot and humid that day. We had to cut it short since a toddler can only handle so much heat and he ran out of energy. He got to ride a couple rides in the Sesame Street area, and loved the 4D Sesame Street show! It was his first movie in a theater. Here are some pictures which I will tell you about the things we did and saw.
Brian had a blast a Busch Garden's. I can't wait to take both boys next year!
That is about it for the family activities. We are busy but it sure doesn't seem like it when I put it out in words.
So to update about the boys.
Brian- One word... busy!
Just this past week he came down with something that spiked his temperature up to 105. No other symptoms and he was better the next day. Very strange and weird, but toddlers just are that way! I can hardly keep him contained these days. If he is left alone for 1 minute he is climbing over the couch and will meet you at the top of the steps. He has scared me to death doing that. Not only climbing the stairs alone but I don't expect him and jump everytime. He's sneaky! We also started Potty Training. He did great on his first day! The second day he wanted nothing to do with the potty and refused to pee on it. He got sick the next day, so potty training is on hold till tomorrow. Here are some random pictures of just every day activities.
He bounced back the next day and was back to tortuing Nathan. Speaking of Nathan...
Nathan- At our last doctor's visit he had an allergic reaction to the band-aids. He got a nasty blister afterward. I'm anxious to talk to his doctor about that at our next visit! He is getting big and changing every day. He likes to play with his toys now and laughs randomly at the silly things Brian does. We are holding off on the solids until 6 months. I am not ready to commit to that just yet!
Dean- He's been busy working! He needs a vacation soon! He been doing alot of fishing lately. That's pretty much all he does. Work and fish!
Me- I've been busy being a mom. I recently started up a small photography company. For now I work with one little girl and hoping to expand soon. I've also gotten into making bread. Here is a loaf of Cinnamon Raisin bread I made for breakfast not to long ago.
Total After: 9.19(4) Smart Water, (2) Deer Park 6 pk, (2) Fruit 2O, (3) Dawn Direct Foam, (2) Playtex Gloves, (2) Reach Floss, (2) Duracell AA 4 pk, (2) Turkey Hill 1/2 Gallons (1) Kotex, (1) Carefree, (1) 2000 Flushes, (1) Hefty EZ Zip 40 ct., (1) Rubbermaid Take-Along
Total After: $6.66
Everything is going well here. Sorry it has been so long on the update. I hope you all enjoyed the pictures!
Posted by Jaime at 2:25 PM 0 comments
Thursday, July 9, 2009
Nathan sits up!
Nathan started trying to sit up not to long ago. Lately when I sit him up he flops forward pretty soon. Well today he sat up straight for a good 15 seconds! I' so proud of my little guy! I can't believe that at 4 months old he is sitting up! Brian never sat up till at least 6 months old! He is growing up so quickly!
Posted by Jaime at 3:57 PM 1 comments
Thursday, June 25, 2009
4 months and 18 months! And Harris Teeter
We went to the doctor today for the boy's checkups. Both boys got shots and neither of them cried!
Brian weighed in at 22 pounds and I think 33 inches (but it might have been 31). He is in the 25th percentile for his weight, 50th percentile for his height, and 75th percentile for his head. I asked the doctor about his slightly turned in foot and she said it will probably still straighten out, but we are watching it. He is in good working order.
Nathan weighed in at 16 pounds 9 ounces. I don't know his height because Dean was doing Nathan. He is in the 75th percentile for his weight and height and 90th percentile for his head. She is watching that to make sure there isn't another big jump. He is developmentally doing well so she thinks he probably just has a big head. She isn't worried about his weight but suggested that we hold off on solids until 6 months. That is fine with me. I'm certainly not in a hurry. He is also in good working order!
Luckily the nurses did both boys at the same time.We looked like a little factory. Picture the weight scale on one wall, the length scale on the opposite wall and Dean and I in the middle. We just picked up our kids off of one machine and turned and put them on the other. I heard numbers being called out and saw nurses writing them down. I can only imagine what it would be like if we had multiples. The appointment is hard enough trying to keep one entertained while the other is examined!
Other news around the house...
I went grocery shopping yesterday at Harris Teeter since they are doing a triple coupon event. Here is a picture of what I got...
3 Betty Crocker Warm Delights
3 Lysol 4 in 1 All Purpose cleaner
2 Tabasco Sauses
2 Lysol Toilet Bowl Cleaner
2 Colgate Advance Toothpaste
2 Colgate 360 Toothbrushes
Dial hand Soap
renuzit odor eliminator
Hot Shot bug spray
Hawaiian Bread
Ben and Jerry's Flipped Out ice cream
Lawry's Merinade
Lysol Bathroom cleaner
The total of my order was $63.22
The total paid out of my pocket was $0.00
Harris Teeter paid me $6.05!!!
By far my best trip ever!
That is about it for around here. Stay tuned for photos from our trip to the zoo!
Posted by Jaime at 8:05 PM 0 comments
Wednesday, June 3, 2009
A long update with tons and tons of pictures!
Well as my mom pointed out it has been awhile since I've updated. I'm not really sure where my time has gone, but I don't seem to have much time for this sometimes. But now I am back. I've got a lot of pictures to share. We have a trip to the aquarium, so of both of them together, some random shots, and I'm sure some other good stuff.
Hmm let's see. Where should I begin? I will update you all first and then tell you what we've been up to with pictures. As a special treat there is a video of Nathan at the end!
Brian- Went poo poo in the potty! It happened a couple of days ago. He was making the face, I ran him to his new big boy potty and he did his business. It's the only time so far, but it's a start! His language is still taking off. Lots of new words, and copying us a lot! He also mooo's when you ask him what a cow says, and rubs his armpits and says oo oo oo when you ask him what a monkey says. Very cute!
Nathan- He is growing like a weed. His biggest thing recently is he sat himself up from a reclined position! I'm impressed! I was pretty floored!
Overall Brian has become much more loving towards Nathan. He's not quite as deadly and is much easier! He says "awww" and lays his head on him and often will give him kisses. We still have the occasional hitting, but it's gotten much better. Nathan is much happier these days since we figured out his formula.
Dean has been very busy at work. He is ready for a vacation and is ready to go see his mom and family soon. It's been really nice fishing weather lately. In his free time he goes out there and fishes. I can't wait for the boys to be able to join him soon.
I've been pretty busy with the boys. I did get a day off recently and went and worked on my scrapbook with my mom. That was nice.
So now the pictures and the stories behind them.
Brian enjoyed "driving" the truck one day. Daddy let him stand in the driver's seat and he loved it!
As a family we went to the Virginia Aquarium. It was nice and Brian loved the fish. I heard him trying to kiss them when they swam by. He got to touch a stingray with my help. I had to hold his hand still in the water or else everyone would have been soaked. It's much more fun in a toddler's eyes to splash the water than to touch the water. He also touched a horseshoe crab. He seemed to like both. We saw the sharks, the river otters, and the seals. Once we got in the car he passed out. A lot of the museum was under construction, so we will go back in a few years and have more fun!
All smiles.
Nathan passed out after a bottle, bath and a bounce.
And for what you have all been waiting for...
Posted by Jaime at 10:32 PM 0 comments