Wednesday, October 20, 2010

What a Week!

Well it's obvious to all that I suck at blogging, just can't ever seem to find the time! So, a lot has happened since this summer and my last post. We had a great trip to Florida in August with family, Emmarie started crawling while we were there, which was a big milestone for her. We were initially worried that she would be somewhat weaker in her upper body, but she is crawling everywhere at warp speed now, so of course she's proved us wrong. Eli started back to pre-school in September after spending almost a week down at the farm with his Grandma and Grandpa Shafer. He's going two days a week this year since next year he will go everyday to pre-k, I can't believe it! He loves school and his brain is like a little sponge absorbing tons of new information everyday. I switched back to my fall schedule in mid-August, which I prefer so that I'm home every morning and early afternoon with the kids. Jason's business is going really well but he is always super busy. That "flexibility" we were hoping for just hasn't really happened yet, but he's enjoying what he's doing which is so important. I actually passed my real estate license exam a few weeks ago, so fortunately I am now able to refer any real estate business to our wonderful realtor Braxton Thomas and receive a part of the commission. At some point in the future I may decide to tackle more of the work and become more actively involved in the transactions, but right now referring business is the perfect situation for us. So, anyone out there looking to buy or sell let me know, Braxton is awesome! And the cool part is I'm allowed to go out and show properties so if anyone is looking for a low stress way to see houses, let me know. I guess that sums up the last few months, so now on to our latest visit to Shriner's hospital with Emmarie.

The big news is that she is scheduled for surgery on her left hand on February 2nd. We are so grateful for the Shriner's hospital as this is an answered prayer. My prayer everyday since she was born is that something will be able to be done to give her more normal appearance and more normal function. Well, that is exactly what the surgeon told us he was going to do. They will basically open the skin between the "thumb" and forefinger since they are somewhat webbed right now. Then they will remove part of the metacarpal bone in the thumb and move the other three bones down and reattach. This will give the digit a more thumblike appearance since now it will only have two phalanges instead of three. The third phalange will function as the metacarpal. They will also be able to rotate the thumb down 90 degrees which will help it function more as an opposable thumb. We were very impressed with Dr. Millstead. He is a very experienced hand surgeon and made us feel very comfortable. So, we will head down to Shreveport on Tuesday February 1s,t and Emmarie will check into the hospital, stay the night and have surgery the next day. Barring any complications she will probably go home on thursday. The recovery process will involve casting her arm for a good 6 to 8 weeks, which won't be fun, but the end result will be worth it I have no doubt. They will do surgery on the right hand eventually after the left one is completely healed up and functioning well. We have no date yet for that. Dr. Millstead doing surgery as soon as possible is best so that her brain can start re-learning how to use her hand properly as soon as possible. They like to wait until the child is at least a year just so the hand isn't so tiny and hard to work with. I'm very excited about the end result, but of course sad that Emmarie will have to endure a certain amount of pain and discomfort to get there. She is so strong-willed and determined I know she will bounce back quickly, but I still know it's going to be a tough couple of months. It's not great timing as meet season kicks into high gear in February-May, and I will have to be out of town a lot for work, but we are so blessed to have family to step in and help when I can't be here. About two weeks after the surgery we will have to go back to Shriner's for a check-up and then the rest of the healing process we should be able to stay here in Tulsa. It is a hard 7 hour drive for Emmarie, but she is trooper. Yesterday she was in the car for 11 total hours and overall did awesome. We're exhausted today and taking it easy, although I have about a million things to do to get ready for Paris. Yes Jason and I leave friday for Paris (France, not Texas:) We are so lucky that my aunt Kathy and Uncle Bruce are bringing us to Paris to visit them. They have been there for I think about 5 years and will be moving home soon so we didn't want to miss this opportunity. We are so excited but I know it's going to be tough to leave the kids for a week. Luckily they have the best babysitter ever! Aunt Alie! Aunt Alie is coming from Chicago to stay at our house and keep the kids in their routine while we are gone. I'm so grateful! Well it's noon and I'm still in my PJs and I need to get the kids lunch and get ready for work:) I will try and get back on here to post some more recent pics.

Wednesday, June 23, 2010

Eli at the lake

After much frustration I have finally figured out how to post a video on here! Here is Eli jumping off the boat at the lake over Memorial Day. Yes he is wearing a ponytail:) We couldn't keep his hair out of his face. You will also see Uncle Jimmy and Daddy in the water, although he didn't need anyone there to catch him. Cousin Jason had the job of lifting him back up every time. He must have jumped off about 20 times! The good news is that he went to bed at 6:30 that night!

Tuesday, June 22, 2010

Genetic Testing and other news

Hello all! I wanted to update everyone since we recently got the results of Emmarie's genetic testing. Emmarie had what they call at TBX5 gene mutation study. Basically in 70% of those people diagnosed with HOS they find a mutation on that gene. Unfortunately (or fortunately I'm not quite sure yet) they did not find any mutations, the test results were "normal." We were hoping they would find the specific gene so that we would be sure of her diagnosis and that Jason and I could get tested to rule out that she inherited the condition from one of us. Although all the doctors have said that it is almost certainly a fresh mutation since neither Jason or I have any signs or symptoms, it still makes me a little nervous. Since they did not find the gene in her, there is nothing to test us for. Basically they would have to map her entire genome to see if there is a mutation somewhere, which is financially impossible right now. The geneticist said there is really no reason to do more testing at this point. It doesn't change the course of treatment. It will be important for her to locate the gene before she has kids, but hopefully by that point genetic testing will have advanced to the point that it is an easier/cheaper process. He also said if anything changes in her that would send us in another direction as far as diagnosis then we will explore other things that could present like HOS. Right now he does not believe that is the case. So, again we're just kind of in a wait and see pattern. She will re-visit both the cardiologist and the orthopedic doctors when she turns a year old. Emmarie is doing awesome, thriving in all areas! She is growing and getting so smart. She's using her hands amazingly well and is right on track developmentally. She started saying "Mama" a few weeks ago which is so amazing! Eli said Dada WAY before he said anything close to Mama. She started clapping this week which is so adorable. She's doing wonderfully well and we feel extremely blessed.

In other news...........we recently had a big change around here when Jason decided to finally make the switch to self-employment. His last day of work was June 8th, and he is thrilled to be out on his own. Things are going well and he is much happier, which is great. He is working with a company calling ESW holdings doing real estate investing. It's a big change for us, but we're confident it's for the better for our family. Finding affordable health insurance has been the biggest challenge, but thanks to President Obama hopefully we can all get covered. I wasn't a fan of Obamacare, but I really had no idea what some of the specifics were. All I know now is that starting September 23rd kids can no longer be denied for pre-existing conditions. That is welcome news for us! Our COBRA payment will be $1100 a month!! but we are hoping that we will get other coverage soon. I've just been saying lots of prayers that it's going to work out and we believe that it will. I now really understand how hard it must be for others who have been in similar situations to get covered. The problem is Emmarie gets denied from private insurance for her condition, denied from State healthcare bc we make too much money, denied from Social Security bc she's not technically "disabled." So that leaves a lot of people in a black hole with no coverage. Anyway, like I said I believe it's all going to work out for the best, we just have to be patient.

So far this summer has been so fun! Here's a short re-cap of what we've been up to. We started it off with a trip to the lake over the Memorial Day weekend. It was fun hanging out with the family. The kids and I have been swimming with friends several times and they both LOVE the water, especially Eli. He is a little fish! He is doing really well at swim lessons and last night swam 1/2 across the pool by himself. Jason was out of town for a few days to a music festival in Tennessee (birthday present from me), and we stayed busy while he was gone. I took Eli to see Shrek 4 (reward for finally being fully potty trained, hallelujah).One day we went swimming and to the circus with friends and had a great time. We recently went to a Driller's game with two fun families and had a blast. Last week we went to the library for storytime and to sign up for the summer reading program. Last weekend we all had a great time at the Vernon family reunion on saturday, and we took Eli to Toy Story 3 on Father's Day. He absolutely loved it of course. Last night Jason and I got to go to the Michael Buble concert which was amazing. He is awesome. Today the kids and I met friends at the new Bentley Park in Bixby for some fun at the Splash Pad and then lunch at Chick-fil-a. I need to get better about taking pictures and video, but here are a few pics from recent events.....

Eli at the Splash Park at 41st and Riverside
Trying to get a picture of them together is pretty much impossible, especially with my iphone.
At the lake for Memorial Day weekend
Eli and Laney on the tube
Driving the boat with Uncle Jimmy
He was in heaven with his cotton candy at the circus.
I think they look so much alike in this picture.
Another attempt at a picture together.

Thursday, May 27, 2010

Happy 1/2 birthday Emmarie!

Well it's been over a month since my last post, no surprise that I haven't been able to keep up! May was a very busy month around here. Here is an update and somewhat recent pic of everyone. Early May was spent planning our annual gymnastics banquet. It was a lot of work, but it went off without a hitch. (minus the point at which I started crying talking about our wonderful Coach Colleen who passed away last fall. I then proceeded to announce to all that I was emotional since I was still "breastfeeding," it was a "tmi" moment for sure. I turned red for days afterward just thinking about it). Our gymnastics family really wanted to have a fundraiser for the Vanzee family, and we decided the banquet would be a perfect way to raise money and honor them at the same time. With tons of help from wonderful parent volunteers and my fellow coaches, the event was a definite success!

Eli's last day of pre-school was today. We will miss Miss Darla! Eli absolutely loves her and she has been such a wonderful first teacher. He will continue at the Life Connection Church for mother's day out once a week this summer and then he'll go 2 days a week starting in the fall.

We made our first trip to the zoo this spring last week. I ended up buying a membership because they were having a special. Eli had a blast! P-pa came with us which was a huge help. Here's Eli with a rhino:)

Here we are taking cover from one of the many spring storms we have here in Oklahoma! We had no power for several hours, but it was fun family bonding time!

Eli had an unfortunate run-in with the tree in our front yard. Poor guy, his lip was swollen and he had some cuts below his nose. He's famous for turning around and running before watching where he's going.

Eli had his 3rd dentist appointment a few weeks ago. He does awesome with the dentist. Dr. Fox and Dr. B told us that Eli needs to stop sucking his thumb:) We're working on it!

Mother's Day was spent visiting Jason's family at the farm. Everyone had a great time. The kids got to play with their cousin Landon and hang out with Grandma Shafer, Grandpa Frank and Grandpa Mashburn. Jason was helping the Wards prepare for their big move to the farm! They are building a house there, and actually they just closed on their house in Arlington today and are beginning an exciting new chapter in their lives.

We went to our first Driller's game in the new ballpark in early May. It was a lot of fun!

I took some garden pics of Emmarie on one random spring day!

Emmarie is doing very well. She had her 6 month checkup in early May and had a cardiologist appointment earlier this week. She is growing great and on track developmentally. Interestingly, I looked back at Eli's 6 month visit and here are their stats side by side:) They are exactly the same in height and head, but Eli was 3 lbs heavier! What a chunk he was:)

Eli: 18 lbs 0 oz- (55%)
Em: 15 lbs 0 oz- (30%)

Eli: 26 1/2 inches (75%)
Em: 26 1/2 inches (75%)

Eli: 17 1/2 (60%)
Em: 17 1/2 (60%)

Emmarie's cardiologist was very pleased with her most recent Echo and EKG. Her VSD is very tiny and a non-issue now. Her aortic arch is no longer "twisty" as it was before and is more of a nice candy cane shape as it should be. Her ASD is still considered moderate to large. They will continue to monitor it every 6 months until such time as a determination is made on surgery. If the hole shows signs of closing on its own and the right atrium is not becoming enlarged due to the excess blood flow, then they will opt to continue to wait and give it a chance to close. If it is not showing signs of closing and the atrium is showing signs of enlargement or if she experiences any other problems then they will opt to close it surgically. It's basically still wait and see at this point. Overall she is thriving and is an incredibly happy baby. She's able to use her hands very well and her fine motor skills are on track for her age. She's starting to eat solids and can grab and eat puffs on her own. She's sitting up, rolling all around, and starting to scoot a little bit. Her physical therapist says she is getting much stronger in her shoulders and we are working on getting on all fours with her belly up to train for crawling. She babbles constantly and loves to laugh. She absolutely loves Eli and laughs at him constantly!

Eli's starting to adjust to being a big brother and his behavior has improved. We're looking forward to a fun summer. He's continuing with swim lessons and is going to try a gymnastics class, we'll see how that goes! He's also going to do a soccer camp. I've decided we'll try sports in small doses until we know he can handle it. After the tball fiasco I've learned my lesson! If he likes the soccer camp, maybe we'll sign him up for a team in the fall (or spring, whenever soccer season is).

I've been off of work this week which has been nice. We start our new summer schedule on June 1st. I asked for a change in our traditional summer workout schedule so that I could have at least 2 mornings to do activities with my own kids. So, I will be working Monday/Wednesday 2-6 and Tuesday/Thursday/Friday 9-1. I'm really excited about the change. I'm also working on completing my real estate license prep course. Yes that's right, I am going to be getting my license. Jason's "side job" is turing in to a full time job, and we decided it would be easier if one of us was licensed to avoid using an outside agent. Since I'm the better studier/test taker type, we decided it was best if I do it. Finding the time to read and take these chapter quizzes is proving to be a challenge, but I actually like it. I'm a nerd like that. I always did love school, and I want to go back someday to get some kind of graduate degree. Anyway, between that class, two kids, a husband, a house, and my job, I'm constantly feeling slightly crazy! I joined a gym to try and get back into shape, but so far I've been pretty unsuccessful at actually going. My goal was to go every morning at around 5:30 after I feed Emmarie (who by the way just isn't the best sleeper!). That's just not happening though. If I can make myself do it for a week I know I'll get in the groove and it will really make me feel better, but it's just taking that first step that's hard. As we say in gymnastics, "the first one's the worst one!" I just need to force myself to do it. It's not as if those couple extra hours of sleep from 5:30-7something are really doing me much good anyway. I just end up being more tired after waking up the second time. Hopefully by the next time I post I will have made the plunge. Everyone have a wonderful holiday weekend! Happy Memorial Day!

Thursday, April 22, 2010

Swingset and Shriner's Visit

Eli's birthday present is finally done! I am enclosing some step by step pics of the building of his new swing set. Thank you so much to P-pa and Daddy for putting it together. It was about a 7 day long project. The entire thing came in 4 long skinny boxes in about a million pieces. Thank you to P-pa, Grandma and Grandpa Martin, and Grandma Wiggy (Vicki) for chipping in on it! Eli absolutely loves it and I'm so glad he has something to do outside now.

The other news is that we went back to Shriners this tuesday for a follow up with the orthopedic hand specialist. She examined Em and said she is completely fine and is going to do very well. We were concerned about her arms and shoulders but the doctor said although the might be slightly shorter/narrower it was nothing that would hold her back in any way. She also said she didn't even think she needed the splints anymore. She doesn't need to see her back until she's 1 to evaluate the surgical options. She told us that if we never did anything with her hands that she would still be 100% functional and will learn to adapt and do everything. Depending on how she's using them at 1 we will decide then whether or not surgery is the best option. This was all wonderful news to say the least. We feel like it was an answered prayer. We won't go back until mid October. We have a follow up with the cardiologist next month and so please continue to pray that the holes in her heart are closing on their own and will not need any intervention. I recently connected with another mom whose 3 year old son has HOS. She said initially he had 6 VSDs and by the time they went in to close them only 1 had to actually be repaired, what a miracle! We are hoping for a similar outcome with Em.

On another note, I wrapped up the gymnastics season last weekend in Colorado Springs. The level 8 team did very well at Regionals. Eli and Emmarie's Grandma Shafer came to visit to help Daddy while I was out of town. They all had a lot of fun! I was exhausted after 5 days of traveling, first to the meet and then to Shriner's, but I'm feeling a lot better today. I'm glad the season is over and we can take it easy for awhile!

Tuesday, April 13, 2010

Elijah James Martin

Eli turned 3 years old last friday! Wow how time flies! Jason and I cannot believe it's been 3 years since that little man made his appearance in the world. He certainly changed our lives forever. I love him so much it hurts sometimes! He wasn't the happiest baby on the block for the first 3 months (colic, crazy mother, etc) but after that he was easy, and turned into an awesome sleeper! He still is for the most part. Although he likes to stay up late and sleep late, which isn't so great sometimes, especially now that Emmarie is just the opposite. I can't keep her up past 8 and she's up at 5. On one hand Eli is extremely stubborn and strong willed, but at the same time he is super sweet and loving. He melts my heart on a daily basis. Last night after he was in bed he came creeping into the living room and said "Momma I needed to check on you, I was worried about you." Granted he was just trying to find an excuse to get out of bed, but it still made me smile and give him a thousand kisses. He is very verbal for three and uses hilarious words all the time. One of his new favorites is "unusual". "Momma there's something unusual in the bathtub." He just cracks me up continually.

Things he loves:

Talking incessantly
Playing make believe (he is constantly taking his cars, trains, men, robots, etc, into fantasy rescue scenarios)
Running, Jumping, Wrestling, sword fighting, karate fighting, and any other kind of fighting
Getting his way
Any sugary food or drink
Organizing, collecting, making lists, "working"
TOOLS! Only the real kind of course, not the thousands of plastic ones he has in his playroom
"reading" i.e making up stories
singing, drumming, playing his keyboard, harmonica, etc.
GUNKY! This is his blanket which he named gunky before he was 1.
Watching movies and memorizing and repeating all the lines (he'll say random things and then later we'll realize he was repeating a movie line)
Buzz and Woody (his best pals)
Playing with rocks and dirt (the reason we had to quit t-ball:)
Doing anything outside
Playing monsters, aliens, bad guys, etc.
Screaming at the top of his lungs
"helping" daddy or P-pa work on anything

Things he doesn't love:

Being quiet
The word "no"
Non-sugary food or drinks
Sharing his toys
Taking a nap
Bugs (a bug landed on him in the car the other day and he freaked out so much that I had to pull over)
Anyone giving Emmarie too much attention
Sitting on the potty (Standing is just fine, but sitting is scary?)
Having anything taken away (this always equals a meltdown)
Picking up his toys

Eli goes to pre-school one day a week and also does swim lessons. He loves both! I'm cherishing every moment since I know one day soon he will no longer let me hold him and cuddle. I'm already sad thinking about that. I'm including some pictures, one at birth, 6 months, 1 year, 2 years, and 3 years old. He's absolutely gorgeous if you ask me, not that I'm biased:) Love that little man!

Wednesday, April 7, 2010

Another day another doctor.........

Hi All! Yesterday Emmarie and I went to see Dr. Kayser here in Tulsa at St. Francis. I wanted to have a local geneticist contact so that he could explain test results and answer questions. Dr. Kayser agreed with Dr. Chen's clinical diagnosis of Holt-Oram Syndrome (referred to from now on as HOS). He sent us to the lab yesterday to get blood drawn, but by the time we got there it was almost 4:30 and they were not able to proceed. Her blood needed to be shipped out immediately and the last shipment was going out at 4:30. So back we went today. It was not fun at all! First we had to wait an hour, and then I had to watch them stick a big needle into my little baby:( I felt so bad. They could barely get any out and I thought they were going to have to try again, but luckily they said it was enough. So, now we wait.......8-10 weeks for results. If they do find a gene mutation then Jason and I will also get tested. We were very worried about the cost of all this, however we did get a bit of good news yesterday. Em's test is really expensive, but luckily any additional family members are much much cheaper. That was a relief! Dr. Kayser explained that once they know exactly what they're looking for it's a lot easier, thus the lower cost of other related individuals. This test doesn't change anything as far as the course of treatment for Em. We're doing it so that we know if there is additional risk for Jason and I to have more children, or down the road if/when she wants children of her own. It also has implications for one of our families if Jason or I have the gene. It seems unlikely at this point since this is a dominant disorder, basically meaning if you have the gene you have it. However, there is such a huge range of presentations of the disorder someone could have a slightly malformed carpal bone (not noticeable to anyone) and they could technically have HOS. So, we still want to make sure that neither Jason or I have the gene mutation. Dr. Kayser also said that 85% of HOS cases are new mutations, meaning not inherited. That is a higher percentage than I had initially read. We also discussed pre-implantation genetic testing using IVF as an option for Emmarie if and when she wants to have kids of her own. That made me feel a lot better. I know that's so far down the road and I shouldn't be thinking about that now, but it is the one thing that was most devastating to me as a mom; the fact that she may not be able to have children of her own for fear of passing it on. Overall I'm feeling very positive and blessed these days. She is so smart and beautiful and such a happy baby! She hardly ever cries and smiles constantly. It broke my heart today that she was lying on the table about to get stuck with a needle just smiling and laughing at the nurse who was about to hurt her. I wished so much that I could tell her it was going to hurt. Poor baby! We head back down to Shreveport on April 20th for a visit with the orthopedic doctor. I'm sure they will want to find out more about what's going on with her upper arms/shoulders now that we have a diagnosis and know that other areas might be affected. I'm hoping that they won't want to take more xrays, but have a feeling they will. I will be going to Colorado Springs for level 8 regionals next weekend. I get back late Sunday and we'll leave Monday evening after Jason gets home from work to drive down to his mom's. We'll stay overnight there and leave super early to get to Shreveport by 10:45. We have to drive all the way home after the appointment this time because Jason has a meeting the next day. It will be a long trip for Em in the car, especially considering she's not a huge fan of the carseat right now! I'm thinking after this visit we won't be going back for several months so that's a small comfort. Our next appointment will be with the cardiologist in May. I'm anxious to tell her about the diagnosis to see if there are other concerns with her heart or things that could develop later. On a more positive note, my PAT (Parents as Teachers) advisor found a website called Madisons Foundation. It was developed by a mom whose daughter was diagnosed with a rare pediatric disease. Once you join it gives you email addresses for other parents who have children with the same disease/disorder etc. So, I sent out an email and already got one response. It's great hearing from another mom. She was very positive and said her 3 year old had 6 VSDs that were all repaired and had bipollization surgery on both of his hands (where they turn the first finger into a thumb). She said he is developing completely normally and requires no other interventions. She also has HOS but said no one would ever know.....makes me wonder about me! I thought I would end telling you all more about Emmarie, beyond the the fact that she may have a genetic disorder.

Things she loves:

Smiling and laughing
Watching her brother do anything
Jumping in her jumparoo (sometimes and not for very long)
Flying with daddy (loves to have that zero gravity feeling)
Getting kisses
Giving kisses (or eating your nose, same difference)
Grabbing absolutely anything she can get her hands on
Blowing bubbles with her spit (she's very good at this and it's LOUD)
Sleeping on Daddy

Things she doesn't love:

Getting stuck by needles
Rice cereal (I tried, she was not a fan, wants to stick to mommy's milk I guess)
Rolling over to her stomach (she rolls over and then gets mad that she's not on her back)
Mommy yelling or talking loudly (this happens often with a 3 yr old in the house!)
Sleeping past 5AM (she's doing great though, sleeping from 9-5, what a relief!)
Watching mommy walk past without picking her up (if she's in her activity center I try to sneak by to do chores around the house, she's fine as long as she doesn't see me:)

**I'm including some Easter pics. We had a fun family day, church, Mema's for lunch and then back home. Saturday we got to go to an Easter Egg hunt at a friends house. Eli had a blast! I've decided my next entry will be an All About Eli event. So stay tuned for that! His birthday is friday and we're taking him to Chuck E. Cheese. He's been once with Jason, but I haven't been in years. I actually can't remember when I last went. Probably for one of the younger cousins birthdays at some point. Should be fun, he will absolutely love it I'm sure.

Happy birthday to my good friend Audra today! Miss you and love you girl! Can't wait to hang out next weekend. Well it's 10:00, bedtime!