Thank you, Thank you!

This year Austin went through 4 months where the Dr. didn't know what was wrong. He was so sick everyday with fevers and couldn't hardly lift his head. A lot of what he was going through a lot of times is what Dr.'s see at the end of life. Everyone one from his Doctor's, nurses an us were all so worried for him. We had no idea what we were dealing with. When Austin went in to have his surgery for his g-button, because he could no longer gain weight, he ran a fever. I was thankful for that fever b/c it encouraged me to push the dr.'s hard to figure out what was going on with him before we were to be discharged b/c Austin had no quality of life being so sick. Even if it was his disorder going down hill I wanted to know what we were working with. I couldn't put enough words in to THANK YOU to the GI team and Dr. Rothbaum who helped diagnosed his crohn's. Since they have been treating this Austin has gained over 12 lbs, he could hardly gain weight before and he has his life back. He smiles, laughs, and plays! We still have to work with balancing his bowels, but the medicine he's on has changed his life. I am so grateful for dr.'s and medicines that have helped him! I have two of the greatest children and I am forever thankful for them and the blessing they are to me as a mom! I am so thankful this Thanksgiving that we have all made it through another year! Happy Thanksgiving to you all!

Seizures (mecp2 duplication and mecp3 triplication kids)

I remember thinking on how well Austin was doing because he had not developed seizures yet with his disorder. We were warned many times by Doctors that this was a possibility with Austin. Although he would have longer seizures when he would spike a temp with a bad illness, we thought then it was only febrile seizures. Now we have learned this is part of Austin's every day life. For so many of these kids who have been on multiple meds it is in their everyday life too. I HATE SEIZURES! I hate watching them every time Austin has one and can not imagine the stress it does on his little body. They look so violent and he has absolutely no control when they happen. I think sometimes that if if talk calmly to him or hold his hand, legs or rub his head that it will make them stop sooner. It is 7 or 8 seconds, which may not seem long, but when it can happen lots of times during the day to an 8 yr olds body is horrible. So because of these seizures we recently have added a new seizure med to one that he is already on. Please pray that this will help reduce the intensity, frequency and hopefully stop them! He is so happy even with everything he goes through, which is such a sweet blessing. He loves school and please pray that this winter has has less sick days than expected so he can stay in school! This is a very hard time of year for him so the healthier the better for this little guy! Thanks for your prayers for him and I hope everyone is enjoying this October!

It has been crazy non-stop busy at our house:)

Woosh, there has been a lot going on! I will start with Miss Abigail! She is doing good. She seems to enjoy school and she is going to get a little extra help each week with reading and writing. Hopefully, with the work my mom and I do at home with her and the help at school she will catch on to this! She has soccer each week and loves it. She knows it takes a lot of energy, but I am so proud of her for putting all her effort in it. She also has her first daisy scouts meeting tonight, so I know she is eager to go to that! This weekend we have an encampment with my family's church at the church camp I grew up at. It will be exciting to show her this amazing place! This past Sunday we took her to have her kindergarten picture done and it turned out so sweet!

Mr. Austin's turn! Austin has been having some issues with his port. A port is a device in his body that allows access to administer meds., IV fluids, and anything that helps with blood draw or frequent hospital stays. Each month his port has to be flushed with heparin to keep his line opened so it doesn't clot. So our home health nurses have had trouble with getting any blood return when flushing it. We have tried a medicine a couple of times that helps with clotting. It works for that one time they need it and then when they come to flush it again it doesn't work. Then we went into radiology to have a dye study done to confirm what was happening and the radiologist couldn't even get it to flush. At that time we thought he needed to have a new one put in. Which if they were doing that caused another issue b/c he was scheduled to have dental work done under anesthesia(sp). Well they didn't want to do the dental work if he was going to have his port worked with b/c it is an extreme high risk with infection! Ugg...So then we had to rethink the port, that if we put it in right now will we run into the same problems if he isn't having to use it a lot right now and it puts him at risk of infection with it in....Then we decided to wait to have this done until he was a point to where he needs it again. So now we are back to trying to schedule getting a port removal done, which has been a go around with surgery with it. So praying this gets going very soon!!! While all this was going on I thought they had cancelled his dental surgery. Well it turns out that it is still a go for Wednesday, so we have been VERY busy working out all the details to come together to get all of this to work out! I am praying that they can remove his port after they do the dental work, but while he is still under...so we don't have to make two trips! On top of it all Abby has been fighting different viruses since she started kindergarten and Austin has had a bad trach infection. Then the poor lil man got so back up with his bowels, his tummy was distended. After we had been doing miralax, prunes and suppositories, we decided to give him and enema this weekend. He was so much better he went back to school today. I hope everyone is enjoying this beautiful fall so far!

Completely Random

We are getting to the end of summer and ready to begin fall. Both kids still enjoy school so much, which is truly a blessing! Abigail received an award for being a peacemaker at school last week. They are trying to get a Daisy Scout troop going which she will be a part of. We also signed her up to learn different soccer drills, which she is very excite about. She is pretty good with a soccer ball. So hopefully she will enjoy this and maybe look into indoor soccer for her this fall if it works out. She LOVES to work on her homework from school, I wonder how long that will last and she has made many new friends. She has a wonderful teacher, which I am very thankful for b/c I know that has to take a lot of patience. She has been sick some with cold/sinus stuff hopefully her immune system will build up and she will stay healthy through the winter months. She's doing good!
Austin absolutely LOVES school. There is such a great team of dedicated people who work with these kids and they are wonderful. I couldn't be more happy about where he is at with school. His favorite is music therapy and music class. He loves music that much! They also do computer programs he watches on the computer that he really enjoys too. He gets lots of therapy throughout the day with the different therapist, which is so good for him. He did battle last week some respiratory issues, dealing with lots of low oxygen sats. and wheezing. So we bumped up his breathing treatments and this week he seems much better. We are not sure if it was from a virus, asthma stuff, or allergies. He is hard to tell which one it was. He right now is managing his crohn's disease and hasn't had to many issues with that. We just have to keep his bowels regular. It will be interesting to see how he does as the ween down again on his steroid that he's on to help his colon. Hopefully all will go well. Really, so far he's doing pretty good and I hope he continues to do really well!

Busy isn't the right word....

Well the kids first day of school was great. Austin started third grade and Abigail kindergarten. Their teachers are wonderful and they both love it! They started on a Tuesday and that Monday I was in the ER with Austin at Children's because he had blood in his feeding tube and was in a lot of pain. They never could tell us why this was and we went home. Tuesday went well with both kids at school. Wednesday, Abby went to school, but Austin was in such severe pain he had a seizure where he stopped breathing and turned blue...for a few seconds. SCARY! So, Thursday morning we were back at the ER and this time they admitted him b/c he was having a crohn's flare up. We stayed in there until Sunday. Then this past week on Tuesday Abigail ran a fever, so she was home on Wednesday. She was back at school on Thursday and on Friday Austin was in so much pain with his feeding tube that they scheduled an upper GI for him on Friday. It seemed that his feeding tube wasn't in the stomach track but was lodged between his skin and stomach, which explains why he is in so much pain! So we went up to the surgery suite and the literally had to pull very hard to get this out of his stomach...and put in a mickey button (G-tube). I am so happy he's adjusting to the trauma from the other one being pulled out and this one...but he's in so much less pain!!! After all this happened, Abigail has spent the weekend coughing and congested, which she can be a bear....I am ready for this week and a lil break from all this while the kids are back at school! I hope everyone can enjoy their week as well!!!
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Shifted Gears

Goodness, it has been a very long time since this blog has been updated. There has been a lot of changes going on! I will start with my sweet lil man. Back in February he started running daily fevers several times a day. He started to not want to have anything to eat, no energy, trouble going to the bathroom, he was so lethargic he wouldn't lift his head up to play. It was heartbreaking b/c we knew this wasn't like him. Several times we would go in for fluids b/c he would be extremely dehydrated. We had a few short admissions, where they would check all kinds of blood work and nothing was showing up...He ended up having an NG tube placed in his nose to help get food into him. Even with this he wasn't any better. Then at the end of May we went to Texas for a medical conference for the MECP2 kids and research which was an incredible experience and we made so many lifetime connections with these families. Austin was sick the entire time we were there....Still didn't know what we were working with. We went in June to have a mickey button placed in his stomach to continue to keep his nutrition up b/c he had lost so much weight and I was determined to not leave the hospital until they knew what was wrong with my son...So we got every set of Dr.'s involved that we could think of to figure this out. Finally after much debate on Dr.'s and lack of communication...someone finally ordered a CT scan of his abdomen. BC his blood was showing some concerning things. It was showing the inflammatory markers in his blood were extremely high witch means that something in his body was inflamed. On the CT scan it confirmed that his colon was enlarged and inflamed and he had an enormous amount of stool in there. Then they started him on a bunch of stuff to help clean him out and ordered a colonoscopy(sp). They did biopsy's and confirmed he had and autoimmune disease called crohn's. They now have him on steroids and an auto immune medicine that has made a huge difference. We were so happy to have an answer and get him treatment to get him well. Well I am happy to say he is doing fantastic! Also we celebrated his 8th birthday this summer! He'll be going to 3rd grade this year!!!

Now Miss Abigail's turn...Well she is doing fantastic! We have spent our summer days with the pool, swim lessons, six flags, friends and just enjoying it! Her biggest adventure coming up is Kindergarten. She will get to attend the same elementary school I went to. She is stoked!! She has all her school supplies and her new backpack and lunch box. I think I will enjoy the break, but can't wait for her to come home and let me know how her days went. One of the friends she made at summer school, was in her swim lesson class and now will be in her kindergarten class and she will have the same teacher from summer school. I couldn't be more proud of her and how well she is doing! Thanks for checking in with us and hope every one's summer has been wonderful as the new school year approaches!

quick update...

Everything is going pretty good. Austin continues to stay for the most part healthy. We have had trouble with the bowel movement area with him recently. I'm trying to have him be somewhat regular or at least going once or twice a week....this is my short term goal for him! He's doing great in school and LOVES being there even if it does wear him out at the end of the day. It's changed his life and I am so excited to see where it takes him!

Sierra has a busy schedule. School, daisies and homework for a first grader are big things! Then she's still doing gymnastics and dance. She is doing good in all areas.

Abby, right now is staying at home with me. We are really pushing letters and numbers with her in hopes to have her ready for kindergarten in the Fall. She is slowly picking up on it and I hope she continues to grow in this. She is your typical sassy 5 yr old that keeps me on my toes!

Have a great January everyone!

Our Christmas post and Happy 2011!

Austin got a new key board for Christmas along with other toys, and this is the ONLY thing he wanted to play with! Love at first song!

The kids in front of our Christmas tree waiting to open the presents Santa brought!

This was Christmas at my parents house, it was absolutely wonderful!

Sierra opening up her stocking at my parents!

Austin was so excited and was moving his arms and legs like a monkey trying to get out of my arms. But he did get a cute critter hat for Christmas!

This is from Abby's birthday we celebrated at home on her actual birthday with family, my mom and brother, and the following weekend we met up with more family at Chucky Cheese! I hope everyone had a wonderful holiday season for 2010 and are continuing to count all your blessings for 2011!

Happy Birthday to me, Happy Birthday to Abby!

On Friday Dec. 10 for my birthday we headed down to Jamaica for the weekend. They updated our room to a suite with two balconies looking over the ocean. AMAZING! We arrived there later Friday afternoon and got settled in our room. We ate a quick late lunch at their beach grill, it was good. Then Friday night we had several course meal at their night club and it was so delicious. Then Saturday morning we got up early and headed out on a catamaran boat. They took us out to a coral reef were if you wanted you could snorkel. It was overcast at that time and really windy, so I opted to stay on the boat, but Bill went out for almost an hour. He saw some beautiful fish he said. Then we went over to the world famous Dunn River Falls. We had the option there to walk up the falls. They said the water was extremely cold and it took about 45 min to climb up 600ft. Bill was the brave one, but they also had a dry walk all the way up to the top on the stairs and at the top you can put your feet in the water. They also had a tourist area there too. The falls were breathtaking. They warned us when we got off the boat that several of the locals would offer us to buy weed or other drugs and they had ways of trying to trick you into it. So you do have to be aware. Then on the way back they take the boat out against the waves and served appetizers and drinks. Being on the boat with mountains and the ocean around you, God's creation is beautiful. That night we ate at the Italian restaurant with some of the best food I have ever tasted along with some really good wine. Then on Sunday we spent time at the pool relaxing until it started to rain. It rained most of the night, so we hung out in our suite and then had dinner again at the Italian restaurant. On Monday we headed home. I would HIGHLY recommend this for couples. I don't know if it is a place I would take young children though. We had such a wonderful time.

Of course while we were gone Austin spiked a fever and since we have been home has been fighting a horrible stomach bug, poor guy...with lots of cleaning up of diarrhea is no fun. Also Sierra caught a nasty cold. So right now we are doing what we can to help him get over this and thankfully Sierra is feeling better.

Tomorrow my baby turns 5. Happy Birthday sweet Abby Sue. I can't believe you will be 5 and how big you are getting. I am so blessed by you and to be your mom! I love you girl!

November is already a busy month...

We had a good Halloween.Sierra was a butterfly, Abigail was little red riding hood, and Austin was a pirate. Abby and my mom went to Kansas City Mo. to go trick or treating with my nephews. I decided to stay home with Austin b/c last year we ended up at Children's Mercy Hospital the day we were leaving b/c Austin had a fever with a seizure. So Sierra, her mom, sister and Grammy all went trunk or treating It was to cold and windy for Austin, we decided to not stay and bring him home.

A couple of weeks ago the kids had parent teacher conferences and they had GREAT reports. I am so thankful we have found a school they all love and are so eager to learn in. Abby loves her new pre-k class that she started in mid October.

My wonderful husband has planned a short vacation, that also falls on my birthday. He found a great deal and we are going to Jamaica, I can't believe I will get to visit such a beautiful Island. I have deffinetly gotten to travel more since I married him, I guess I can't complain, we have seen so many beautiful places. Thank you so much to all who are able to help with the kids so we can do this.

Austin is fighting a horrible bug. He doesn't have any energy and has been running a fever since Sunday. We took a trach culture today in hopes to know something and start him on medicine. We are praying we will be able to do this without any hospital stay this time.

Happy Birthday to my mom, tomorrow...Hope it's an awesome one! I hope everyone is enjoying fall as we get closer to Thanksgiving. We are blessed and are thankful for so much this past year! Have a great one everyone!!!

It's all about the family...

We have been staying busy. When October hits it usually means the kids start to get sick. Abby and Sierra have both experienced their first nasty colds for the fall. Austin has had some extra congestion, fever and diarrhea, so he has started his breathing treatments. With Bill working, being in school so much and running Sierra around to her gymnastics and dance...we both are staying busy with keeping up with the kids when we are home. ON a good note, my parents and I took the kids to grants farm earlier this month and had a delightful time. We also got to take the kids to a fall festival included with a carnival and fireworks, called Valleydays. That was also a ton of fun! Sierra got to even meet up with her uncle and cousins that she doesn't always get to see.
One of the more exciting things that has happened is my brother recently got engaged. We soon will be welcoming Rachel to our family, as an Aunt, daughter-n-law and sister n-law. We are thrilled for both of them.

So we are staying pretty busy here. Maybe, just maybe if all works out, the hubby and I will be able to plan a pretty short get-a-way in a couple of months. There is a lot to look forward to here and we will keep you posted. Aren't you enjoying this awesome fall weather!!!!!

Enjoy and Love the St. Louis free Zoo!

We enjoyed so much going to the zoo yesterday. Even though it was very windy and cold for Austin to be out in and breath the air for that long, the girls really enjoyed it. Austin partied and Nana's house, which he loves! I hope you all enjoy the pictures.

Life...as WE know it!

Hey everyone, here is what we have been up to. A couple of weeks ago Valley Park hosted a valley palooza for the second year in a row. Last year was a huge success and raised money for a child in Austin's room at school. Extreme Makeover wasn't able to assist them because they said the street wasn't one they were able to shut down for and extended period of time. So they started this music festival and raised money to help out a family who had a son that needed help in making his life easier with his disorder. We went last year and had such an awesome time we couldn't pass it up this year. This year it was for a 27 yr old boy who lives with his mom that works a full time job and his grandma lives with them so she can help out. He has severe special needs. This year they raised over 40,000 dollars. HOW AWESOME IS THAT. I loved that we could help out in a little way. With having Austin you understand the sacrifice of taking care of someone with multiple needs and both stories touched our hearts. The girls loved getting involved in giving back!

Bill has started school two nights a week. I am so proud of him for doing this to make a better life for us in the long run. Austin is still doing great. Sierra is doing great in 1st grade and is adjusting well to the schedule. She also stays busy with gymnastics and dance. Abby keeps me busy while the other two are in school. That's about all we have to report for now...until next time! I wish everyone a happy fall. I love the weather!

He's beautifuly and wonderfuly made

"I have been blessed And I feel like I’ve found my way. I thank God for all I’ve been given. At the end of every day. I have been blessed. With so much more than I deserve. To be here with the ones. That love me To love them so much it hurtsI have been blessed."

I am so proud of him. He's going all day at school for the first time ever. He is up to working in his standar at school twice a day. He is into everything, which is a good thing. He "crawls," rolls, scoots, and gets everywhere he can. He has an awesome apatite. he has lost 4 teeth. He is staying healthy, praise God. He LOVES school! He is growing up and I am so honored that God choose me to be his mom, what a great kid!

celebration!

On Sunday we celebrated Sierra's birthday at chuck -e- cheese. I think everyone enjoyed this. It was an interesting group of people there because we all love this girl! If I explained everyone in these pictures, it may sound a bit confusing....So I will leave you with these pictures of our fun day with Sierra!

Ben and Lia's wedding

This weekend we celebrated with my borther -n- law as he married his beautiful bride Lia. What a beautiful wedding with great weather. Sierra was the flower girl and Bill was his best man. I also now have a niece and nephew, Welcome to the family Elizabeth and Michael! We also celebrated Sierra's birthday on Sunday, pics to come!

HAPPY 7th BIRTHDAY SWEET GIRL!

Today Sierra Lynn is 7. I can not believe how much she has grown up since her Dad and I first started dating! TIME NEEDS TO SLOW DOWN!!!

7 Things special about her are

1. She loves being in 1st grade

2. She is SO talented at gymnastics, can't wait to see where it takes her

3.She loves country music

4. We love to watch her dance

4.She is a great helper with Austin and Abby

6.She loves the outdoors and camping

7.She has such a sweet spirit and is growing into such a sweet little lady!

#2 Gone

Abby lost her second tooth on Thursday night! She was just wiggling the tooth so much that day and by the evening it was just hanging there. I told her we had to pull it so the tooth fairy could come and because I didn't want her swallowing it in her sleep. The girls only 4 and has already lost two teeth....CRAZY!!! Enjoy your weekend everyone!

And they are off!

Today was Austin's first day of second grade. It also is a milestone, he's attending for the first time all day. In the past, because of his health, he's gong half days. We are all praying this is a positive transition that he is ready for health wise. The teacher called earlier today and said he was so happy! Sierra had her first day of first grade. I think she was so excited that she was up early and fell asleep about 10. Abby and I are doing pre-k at home until we are at a point where we can send her. We got some fun things for her to work with. I am so happy to see them off, because they all like school and do so well where they are at. I'm glad to have a break! I hope everyone has easy transitions for school this year as well!

Summer days drifting away!