Before's and hopefully afters to come soon

So I thought I would introduce everyone to our new home. We are so excited to have our own home, not just our own home but in our neighborhood, in fact right next door to the house we are currently renting! We thought it would be a good start to post some before pictures of the house. We are going to be painting the interior all week this week and then next week they will be putting in new carpet and linoleum. Then next month we are putting all new hardware in the kitchen including new faucets and maybe a new sink. Then we will be working on the hall bathroom upstairs. Then we will be working on some curb appeal items. Come spring we will be putting a tough non slip seal on both decks and refinishing the kitchen cupboards too.  We get so lost in Home Depot now. Went in for moving boxes and spent two hours wandering and making our wish lists.

Kitchen

Front room

Robert and Ian's room

Hall bathroom

Hall Bathroom

Hall Bathroom

Master bedroom

Master bath

Master bath

Master bath

Payton's room

Family room

Deck

Katie and Andie's bedroom

Basement/girls bathroom

Laundry room

Kitchen

The house

Have I said I hate moving?!

Our move day draws closer and my uneasiness grows too. I told myself that this time I would pack up early, this time I would be more than ready when the day came, no more last minute packing. HAHAHA! Yet somehow I find myself less than 2 weeks from moving day and still not ready. I look at all we have to pack and just feel overwhelmed with what needs to be accomplished in the next few weeks. We have to finish packing our home, paint the new house, and get the old house cleaned up for new renters. We packed over 20 boxes last weekend and it feels like nothing. I wonder if I am the only one who ever thinks just burn it all and we will start over?! I can't be alone in that right?? So anyway, the preparations continue for the new house. We have picked out colors for all of the rooms, started painting closet doors and trim yesterday, picked out the new carpet and linoleum, and have all the utilities and such ready to be moved. I am excited and nervous to be a home owner. I know that it changes so many things for us and it means so many things for our family. Please continue to keep us all in your prayers as we move forward with our new endeavor.

Also have to give a big mommy brag shout out to my kids. Robert finished his first football season playing for the school undefeated 6-0 :). I am so proud of him and how hard he worked this year. I love seeing him out on the field and doing what he loves so much! Katie had her first concert as an 8th grader in choir. She had a solo and it was beautiful! She also tried out for all district honor choir and made it and tried out for all state honor choir and we should know the results of that by the end of the year. So proud of her and how far she has come with her gift in two years. Andie is reading and doing so well in math that they are talking about phasing her out of special education! What a huge accomplishment for her. We know that dyslexia will be a lifetime challenge for her but I think she has learned some great tools to help her continue to grow. She has worked so hard to get to this point and I am so proud of her and getting to see all of that pay off.

Payton actually made it 10 days seizure free this month. Talk about a huge milestone. I don't remember the last time we went 10 days without an episode. Praying that next time she will make it even more. She has also started pulling herself to standing using the couch. We keep hoping by the end of the school year she will take some steps. Please keep praying for her to keep blowing the Dr's away with all of her accomplishments.

We were denied again for life insurance for Payton. We have tried everything and every way to try and get her covered and no one will let her on. We even tried adding her on to my company policy and they said no. This is a real issue for our family and we just aren't sure what we need to do next. We have been proposed the option of doing a prepay for any final expenses but for some reason that idea is very hard for me. It just makes the inevitable more concrete for us with every monthly payment we make towards that. Please pray for us in this space to that something will fall into place or for peace for me with the prepayment option.

Moving on up :)

I know I know I haven't posted since the end of June...what is my problem right?! Well things have been pretty busy but still no excuse.

We took vacation to South Dakota for the 4th of July, and it was amazing. So much fun just to get away from everything and spend some time with the kids in the great outdoors. I love camping with my family. No technology, no time constraints, just us and lots of laughs. We went to Mt Rushmore and it really is an awe inspiring thing to see in person. We also spent a day at the Crazy Horse Memorial as well. The kids actually enjoyed the day at Crazy Horse more than Rushmore. I think the fact that it is still actively under construction is really interesting and stirs up lots of questions for kids. Plus they each got a rock that was blasted off the mountain to take home :). I must say someone at the Crazy Horse is a genius. We paid money to come in and haul off their debris LOL! We also spent a gorgeous day in Custer state park. Driving the wildlife loop was amazing. I couldn't believe that the buffalo got so close you could touch them, if you would have been crazy enough to do that!

In August we went to Chicago for the Aicardi Syndrome Family Conference. This is one of the most amazing weekends we get to be a part of. I wish we could do these more than just once every two years. The time we get to spend with other families who are walking through this same journey is priceless. I love meeting all of the girls and getting to talk to the parents. The internet is great for connecting the families but there is nothing like getting to speak face to face and share those hugs and smiles together. We also took home some great information and new ideas from the classes and seminars. Nothing like learning from parents who have been there and done that. Of course we made our way to downtown Chicago for an afternoon and enjoyed some real Chicago style pizza and of course the kids had to go to the park to see the Cloud sculpture (or the big bean as the kids called it). I have never see kids more excited to see a sculpture. They said it wasn't a trip to Chicago if they didn't.

So the school year has already started and with that comes lots of new friends, activities and of course stress. Football season started at the end of August and that means lots of running around and hard work for Robert. Weeknight games now mean staying up until 10:30 just to get homework finished, but he knows bad grades means no sports.  So far we have had an undefeated season, but our toughest team is still to come. Robert is the starting right tackle and really rocking it this year. He has found his strength and his spot on the team and continues to get better with every game.

My beautiful Katie has continued to grow into such a beautiful young lady. She has been working so hard to achieve nothing but straight A's this year. She has made a promise to herself to receive the highest honor roll award at the end of the year this year and is well on her way. She toured the Colorado Springs Early College Program campus this fall and has decided that is where she would like to attend High School next year. I can't believe I am a year away from having a freshman in High School! She has also asked to start taking archery lessons. Not sure where I am going to find that at but I will keep looking until I do.

Andie has moved on to 5th grade and is excelling! She is doing so well in conquering Dyslexia. I am so proud of the hard work she puts in and the progress she is making. She has not quite hit her grade level at this point but I know she will before the end of her fifth grade year. She has made so many new friends in the neighborhood and I love watching all of them grow together. It brings me so much joy to watch our house fill with her friends that she is getting to grow with and learn with. These are the connections that she will hopefully have for a lifetime. Which brings me to some really big news.....

We are buying a house!!! We have decided to buy the house next door to us!! After our dear neighbor Ron passed away his wife Joni decided to sell the house. We prayed on it and asked God for direction and feel that He has placed this blessing before us. The house is bigger than the one we are in now and of course the best part it keeps us in the neighborhood we love and lets the kids go to the schools they love. It feels so wonderful to know that they will not have to move again, that they can grow up in this neighborhood. We will be moving in on November 1st, after new carpet and linoleum are installed and we paint the interior. Thank you God for the abundant blessings you continue to pour out on our family.

One thing leads to another :) And a birthday too!

Can you believe that this last week our beautiful little girl turned 4! Seems like it was just yesterday she was born. These last four years have been a roller coaster ride to say the least but not a ride I would trade for the world. She has blessed us all, and anyone who is lucky enough to know her in so many ways. Happy Birthday to my sweet princess warrior Payton!

We are going to be spending lots of the month of July on vacations. We are heading to Mount Rushmore to go camping next week (shhhhhhhh the kids don't know :) ). Then on July 24 we will be heading to the Aicardi Family Conference in Chicago. Thanks to the generosity of so many friends and family that have helped to make this trip a reality for our family. It just makes me want to cry thinking about it. 

Payton also has lots of Dr's appointments and tests coming up. She has to go back to the orthopedic Dr since her scoliosis has gotten worse in the last year. So much so that it is causing a lump in her back. Hopefully we can get her fitted for a brace and get her straightened back out. We are working on standing more with her in hopes that will straighten her out too. She is also going to have a sleep study done. They believe that Payton has apnea and we need to figure out what kind she has and how bad it is. We also got the Dr to write out a prescription for diapers for Payton. Now that she is 4 insurance will pay for her diapers. That will be so nice not to have that expense every month. They also wrote out a prescription/recommendation for a sleep safe bed for Payton. Insurance should pick up the cost for that as well since it is the safest option for Payton. Typical twin size beds are not safe for her and a hospital bed is an even worse idea. We see the cardiologist next week for the narrowing that they found in her pulmonary artery as well as the CT scan revealed that the stricture in her throat is several blood vessels wrapping around her esophagus and squeezing in on it. The cardiologist might be able to fix this for her but we won't know until next week. 

On another happy note Ryan will be starting his CNA class on June 30th! This means that he will finish by the end of July and should begin receiving pay for taking care of Payton in August. So glad that the state we live in has this program for families like ours. It has been a struggle being a single income family for the last four years since one of us has to be home to be with Payton. This will take so much pressure off of us and allow us some breathing room with our finances and best of all the option to start saving again :). 

OOOOOHHHH I almost forgot I am so proud of my wonderful son Robert! He has been chosen to be an ambassador at his school for the coming school year. This means he has to go back a few days before his friends and he will be showing the incoming 6th graders around and making sure that they are doing well the first few weeks and mentor them through the transition from elementary to middle school. He is so excited to get to do this for these kids. I love the heart of service that God has given him. He is always ready to be there for others. What a blessing he is!

Testing 1...2...3

Next week I will be out of town in San Francisco for a conference for most of the week, I have never been away from the family by myself for so long before. It's going to be a challenge for me but I know it's going to be good too! I have never been to S.F. so this will be quite the adventure! Hopefully the city can handle me :).

We have gotten Payton's CT scan scheduled for the morning of June 3rd at 6:30 am. I guess they don't typically do CT scans with anesthesia but that is what the Dr ordered for Payton and that made the scheduling a little tricky. Payton has to have a high risk anesthesiologist and those take a little longer to get in with. It's got me a little nervous since we have had quite a roller coaster ride about this whole thing so far. There is part of me that just is ready to get a good and final answer and hopefully this is the last test they will need for that. Please keep us in prayer as we head into the procedure on that morning that the Dr's will get what they need and we don't have to do any more testing.

Flea Market Game?!

Oh Boy! We had so much fun today! We took the kids to the Flea Market and decided to play the Flea Market Game. I found this idea on Pinterest (yes I am an addict, there needs to be a 12 step program with all the details on Pinterest!!) Everyone was given only $10 to make the best deals of the day. The kids learned what a good price was and how to barter/haggle a little bit to get the better price. We decided everyone was a winner with all of our great finds and that all winners need Dairy Queen blizzards! What a great way to spend our day, plus we had some great friends join us. Then we headed over to the library and got some books to get us through the next few weeks, of course the kids will be ready to take theirs back in 2 days. Got home and has some brats, with sauerkraut of course. Now it's time to chill with a drink in my hand and watch a movie with my amazing husband. These kinds of days where we can just be like any other family for just a few hours are priceless. For more great ideas on fun things to do with the family and great meal ideas follow me on Pinterest @ http://www.pinterest.com/tanyaj122/ . We are at a crossroads in our lives and to just take the time to enjoy these little moments is an awesome gift from an amazing God.

Guess everyone makes mistakes

So after Payton had her upper GI done I had told you all that the Dr had said that he didn't see the growth in Paytons throat and that it wasn't vascular. Sadly we received a phone call yesterday evening from the GI saying that they made a mistake and that they believe it to be a vascular anomaly. This means that the steps we had planned on going forward to dialate her throat are right now a no go. She is schedule to have a CT scan done in the next few weeks and we will see what that looks like. This should give the Dr's a better idea of what it is connecting to. If that test comes back that it is vascular than we cannot dialate or remove it since that is just to dangerous. That would mean some more testing to see if this is something that is growing and changing. If it is obviously we would have to start looking at some other options for her as far as feeding goes. We were told when Payton was very small that children born with her type of heart condition often have other issues with arteries and vessels but you just have to wait to find them most of the time. Looks like we have made our first discovery.

I have to admit I was pretty upset yesterday evening. I know that Dr's are only human and just as capable of making mistakes as I am. I am just struggling right now with the roller coaster ride of ups and downs we have had in the last few weeks. I know that He has this all in His capable hands. I have prayed for God to take this away from her, but also that not my will but His will be done through all of this. I ask that you please continue to pray for all of us and for the Dr's as we go forward from here.

Answers Finally

So after over a month of waiting, and back and forth phone calls, and feeling just a little bit ignored. We have some answers to some of our questions on Payton's endoscopy results. The ring like growth in her esophagus is not vascular! Praise God that was what we were hoping for. She will have one more test this coming Monday just to take another look at it. Monday morning she has an upper GI study (a swallow study) and they will just watch her eat under an x ray essentially. As long as that all looks good, which the Dr is fairly certain it will, they will move on to the next steps. That will mean that about 2 weeks from Monday they will do a dilation. It is a fairly simple procedure. They will put the same type of camera down her throat that they used for the endoscopy but there will be a balloon on the end of it and they will inflate that to stretch out that portion of her throat to the same size as the rest. They may have to repeat this one or two more times to get it to stay permanently but it is still better than the risks associate with having it surgically fixed. We are also on the waiting list, typically about 6 weeks, to see the motility specialist at Children's and see if he can answer some of the other questions about Payton's digestion.


In other news spring football has ended...with a 4-1 record. Proud of our boys, and sad too since this is the last season they will all play together. From this point forward they will each play for their respect middle and high schools. Coach Ryan had a hard time not crying saying goodbye to some of the kids. He really loved coaching them, he wishes he had the time to coach a team of younger kids next year but college just won't allow that right now. Robert did great and only struggled with the confidence he needed to get out there and play like a champ once. We realized after the first couple of games that what happened to him last fall was definetly more on his mind and still having much more effect than we realized. We made the decision to put him in therapy and WOW! It has made such a difference. He really likes the therapist and comes out of there feeling such a relief and loving that he has someone that he can share with and really just talk to without any judgement. I am so happy that this is a positive experience for him. The girls are counting down the days to the end of the school year, and so is Ryan :).  I can't believe this school year is already over, it went so fast. Katie is in archery club and still rocking it in choir. She went out for the solo again but didn't get it this time, and she is OK with that, she says everyone should get the opportunity to get the solo. Andie is the most hormonal 10 year old I have ever seen. Everything is filled with drama in her little life already. Not sure what I am going to do when she is a teenager. Lord give me strength! I can't believe that next year Ian will be a Jr high student. That just leaves Andie and Payton in elementary school. He is really wanting to play football this fall and I hope he gets to!

We are still working on fundraising to get to Chicago this summer for the Aicardi conference. One of the Dr's who is studying Aicardi syndrome contacted Payton's preschool teacher when he found out she had an Aicardi student to ask if we would be willing to talk to him. He will be at the conference this year and it would be an amazing opportunity for us to sit and talk with him without some of the expenses of cross country travel to get to him at UCLA. Please help us get there if you can. Whether you can help with a donation or just by sharing our fundraising page it all helps.

Spring time???

Spring has sprung in Colorado Springs....or has it?!?! In just one day we went from warm enough for the kids to be out playing football in front of the church to raining, to snowing. Oh how I love Colorado weather (insert sarcastic voice). As my husband put it "This weather is perfect, it makes everyone happy all in one day." I wish I could agree. Happy for me is much warmer and staying much warmer. Oh well we will get there.

So our first football game of the spring season has come and gone. The boys lost but I know that Robert played his heart out and was pretty impressive out there. He was glad to be back out on the field and said it felt really good to get out there and start hitting again. Practice this week is probably going to be pretty intense since there is plenty of room for improvement at this point. So proud of Robert though for getting back out there and putting his all in it.

We did get an unexpected phone call this week from the GI Dr. After going over the photos in more detail they did find some ulcers in Payton's lower esophagus. This shows that she does have some acid reflux that could be a problem for her. We started her on a Zantac suspension and hopefully this should help with that. We are now waiting for the call back to schedule a CAT scan since they weren't able to determine if the ring is vascular or not. Whew! This has definitely turned into a lot more than just an endoscopy!

Also we are still working on fund raising for the Aicardi Conference in July. I know it is a couple of months away but for our family we have to start thinking ahead now. Please if you can help out no matter how big or small, even if you just share it with your friends it would mean so much to us.

I am so bad....

Ok so I am a bad blogger! I let my life get a little to full and haven't updated here. So here goes...this could take a while. Lets start with Payton. Payton saw the GI Dr. and we were ordered to keep going with the pediasure since she did gain some weight by supplementing that in her diet several times a day. They also ordered an endoscopy and a swallow study just to make sure there are no mechanical issues that are causing her feeding issues. We had the endoscopy done on the 28th of March. There were mixed results. They did not find the ulcers that they had thought they would find since the Dr had thought Payton had reflux. SO that is a good thing. They did however find some thing else that is concerning. Payton has a constriction in her esophagus which could be one of the issues with feeding. They did a biopsy so that they can figure out what it is. The concern is that it is vascular, since it was pulsing, in which case there would be nothing we could do to fix it. If it is not vascular we can either have it surgically removed or have a procedure done where they would stretch it. Still waiting on the biopsy results at this time.  Gross out warning! The top picture is what Payton's throat looks like and the bottom picture is what it should look like. 

 

In even more news on Payton, her NovaChat finally arrived! We have been waiting for over a year for this and it is finally here! Her speech therapist came today to get it all set up and to get Payton started using it. I can't wait for Payton to be able to better communicate her needs and wants to us.  

Robert is back to playing football, I have to admit it makes me a little bit nervous with his jaw, but I know that I cannot show that to him. He had a few moments where he was definitely scared and a little timid but with a few weeks of practice I can definitely see him coming back full force to being the awesome player that he has always been! Our first game is Saturday, 8:30am at Memorial Park, which means 7:30 arrival time but we will be there bright and early!! GO RAVENS!!!!  

Andie had her amazing 10th birthday party the past weekend. An all out boys vs girls Nerf gun war and a girly sleepover after. It was fun but someone please remind me next year when she asks for a sleepover what it was like this year! I can't believe how much drama 10 year old girls can bring. Poor Ian was stuck there all alone as the only boy. Robert was hiking in Utah with his best buddy Max for half of spring break and missed out on the party. Andie also had her IEP last month and for the first time EVER my baby girl is reading at grade level! I am so proud of her! She is learning that dyslexia does not have to be a stumbling block but a stepping stone. GO ANDIE!!

Miss Katie is going out for Softball again this year and she is super excited about it. We also found a diving club here in Colorado Springs that we are going to try and get her in within the next few months. She loves diving and is so good at it I don't want her to lose that. She is also doing really great in school and I am so proud of her because I know that 7th grade was a bit of a struggle for her at the beginning of the year but she has really worked hard to get back on top of it! She has her large group competition for choir coming up, she is learning to sight read and will be tested on that as part of the competition and I know she will do great. Have a I mentioned that she sings like an angel....because she sings like an angel!!

Ryan is still doing amazing in school. He made the Dean's list and is loving his classes. He has made some great friends there and several of them have started a men's Bible study on Friday nights. I love to see him meeting new people and coming together to worship and grow their faith together. 

I will make a much more concerted effort to not let myself get to distracted to remember to make updates here! 

Relief oh sweet relief

This week has been a little bit of an emotional one for me (I know it's only Tuesday!). Yesterday was the final sentencing for the boy who broke Robert's jaw. He plead guilty just about a month ago and yesterday it was over. Oh the relief of knowing this part was over. I cried, not just for our family and what this has been for us, but for the other family as well and all that this has been for them. I prayed for peace for our home, for this to be just a blip in the radar for Robert and not to have been a defining moment. I prayed for the other family for peace for them, for them to grow through this in a positive way, to not let this define them.






For those of you who might not know, in August of 2013 Robert was playing at a scrimmage for Colorado Springs Parks and Rec youth football, when another youth player lost his temper and kicked Robert in the face. This broke his jaw in two places, a compound fracture even with part of the jaw bone protruding into his mouth, and landed him in the hospital. Robert had to have emergency surgery and had his jaw wired shut for 6 weeks. This was extremely difficult for Robert and he struggled with not being able to eat real food and living on Ensure and blended food. He lost over 20 pounds during this ordeal, but he has come back and is stronger than ever. He will need braces in the near future to straighten out the misalignment of his jaw that occurred because of the location of the break, right at the joint, it was very difficult to wire it up. It was a difficult decision and not one that we took lightly to press charges against the other kid. He never apologized or reached out in any way to show remorse for his actions and we just couldn't in good conscience let him feel that this was OK to do to another person. And yes he was made aware of the severity of the injury that he caused by the coaches on his own team and still nothing. Robert was shown so much love and support through this from family, friends, the amazing teachers, counselors, and principle at his school, his teammates, and the officers at the CSPD. It was such a blessing to see something that could have been such a negative experience be changed to a positive for my wonderful little man.

The roller-coaster ride that this has been finally feels like it is coming to a rest at the end of the ride. I know that there are still emotional scars that we need to deal with for Robert as well as the rest of the family. I realize that something like this can have a long lasting impact, I just pray for our family to have the strength to get through it with grace and compassion.

So conflicted

I meant to post yesterday and well...life happened. The last few days have been filled with lots of conflicting emotions and opinions. We were able to get in to see the pediatrician on Tuesday morning. I went in fully prepared to go over our next steps for getting the NG tube placed. Well, her ped had a completely different idea. She was completely opposed to having the NG tube, not only opposed but doing everything that she could to put a fear into us of how horrible doing this to Payton would be and that if we want a tube we should just go for the G tube. I was pretty unhappy with her approach. Believe me there is no part of me that wants to see my beautiful baby girl being fed through a tube, I don't want this. In the same breath I don't want to keep trying the same things over and over that have not worked in the past until we don't have a choice but to go to the G tube.


We will be seeing a GI Dr the 6th of March and until then we will be giving her plan of action a try...that is until we run out of money for her plan. Sadly most of what she would like us to purchase and change is not covered by Payton's insurance which means a lot of unexpected out of pocket expense for our family. It is so hard for me, it feels like I have to make the choice between my children. Do I do what they are asking for Payton at the cost of what the other kids need? I hate this feeling! So just to break down what we will be trying over the next several weeks: 2 adult doses of Miralax everyday for 2 weeks to "clean" Payton out, Colace everyday as well as part of the "cleanse", a daily high quality probiotic (at $50 every two weeks NOT covered by insurance), adding at least 2 Pediasure's to her diet every day on top of her 3 meals a day (partially covered by insurance), putting all of Payton's meals through a baby food grinder so that she doesn't have to work so hard at her feeding (a step backwards in my opinion for someone who says she just wants to see Payton move forward), a two week intensive feeding therapy program at Children's hospital Memorial Hospital branch, appointments with a dietitian to go over changes to make Payton's diet "higher quality".  Did I mention a lot of this has been done before??? The only new thing is adding the probiotic. Her Ped just wants to see the results of all of this herself. Not sure if she just doesn't trust me or what the issue is. I feel like I was not listened to. I feel like every time I spoke up or said I wasn't sure we were doing what was best for Payton right now she looked right past me to get the approval from my husband instead. I know that he has seen her more than I have, that quite frankly when it comes to Payton's medical care I am now an outsider looking in, but I am still her mother.

I just continue to pray for wisdom for the Dr's and for our family as well as guidance and peace in all of this.

Going Tubing...

Yesterday was a difficult day in our house. It started off as a day that we were filled with so much hope and encouragement about next steps in our journey with Payton. We had an appointment at CHoC that we thought was going to turn a corner for our treatment of her seizures. It turned a corner all right and we smacked right into a big brick wall. First off her neurologist has now refused to sign her papers to get her red card for Charlotte's Web. It was not only that she didn't want to sign it but she did everything in her power to steer us away from it. She has asked us to give the other medicine, Onfi, another try while we wait on the list for the CW. We have used the Onfi before with no success with Payton, but it was a very small dose. We agreed to give a stepped up dosing schedule a try while we continue to wait for the CW, which won't be available to Payton until at least October.

 Now for the BIG whammo...the Dr's want to put Payton on a feeding tube. Talk about a kick in the gut. We went up there yesterday thinking we were taking a step in one direction, only to find out we were going to be going a completely different direction. We were just completely shocked when they told us this. I will admit, I spent a lot of the day yesterday in tears, and in prayer. I ran the gamut of angry, asking why, asking for guidance, and finally accepting His direction. Payton has not gained any weight in almost a year, in fact she has lost some. It can take up to an hour to get through feeding her a full meal, and that's if she doesn't lose interest and quit. She has never really been good at chewing, but we have continued to work on it with her hoping that we could get past that, but eating has always been a struggle. We have tried protein shakes, and adding other things to her diet with no luck. There is a a bit of good news to it though, we will not be jumping straight to a G-tube. Her Dr would like to do an NG tube first. That is the tube that will run up her nose and into her stomach. She will only be hooked up to the pump at night to receive some extra nutrition at night. During the day we can continue to work on feeding and chewing to see if we can get that going better. I think we realized that feeding for Payton is more of an inclusion thing for our family, not necessarily something that is providing her the whole nutrition that she needs. We also know that with getting more nutrition and the right nutrition into her body will possibly be a help in her doing so much more than she is able to do now. She tires very easily and is still needing several naps everyday and it could be just that she is not getting as much nutrition at meal times as we would like to believe that she is. We will be doing some blood work in the next week to make sure that the problem is not her thyroid or that her growth hormone is off before we put the tube in. If the NG tube ends up helping her and we cannot improve her oral feedings we will then discuss a G-tube for her.

 Please continue to pray for our whole family as we go through this transition. We had always thought that we were going to be able to avoid the tube. I know it is going to sound strange, but it was always something that brought us a sense of how well she was doing that we weren't on a feeding tube. I know in my head that a feeding tube does not mean that she is not doing well, but in my heart it hurts. It feels like a step back from where we have worked so hard to get. I woke up this morning feeling so much more at peace with all of this after spending a LOT of time in prayer yesterday and last night. I love it when He speaks to you, I just have to share in closing a quote from my study this morning in Jesus Calling: "I am above all things: your problems, your pain, and swirling events in this ever changing world. When you behold my face your rise above circumstances and rest with me in heavenly realms. This is the way of Peace, living in the Light of My Presence. I guarantee you will always have problems in this world but they must not become your focus. When you feel yourself sinking in the sea of circumstances, say "Help me, Jesus" and I will draw you back to Me." I love it when God grabs me like that first thing in my day. Thank you Jesus for pulling me closer to you.

The Little Things

Today I was talking to some friends about Payton's seizures. I was trying very hard to keep it together, while I was explaining what her night was like and how sometimes it is really hard to come in to work and keep it together and just act like I can handle it all. Then I come home and check my Facebook and see all the families with little girls in the hopsital. These girls are fighting for their lives. Does it make me a whiner to complain about our problems when they seem so small in comparison to what I know other families are going through? I know that it probably sounds silly but today was one of those days. One of those days when I felt like I was just complaining about something so small in the grand scheme of it all. Looking and hearing about how much worse it could be. I had to stop and count my blessings. I have 4 other amazing kids who are happy, healthy, kind, caring, love God, and I could go on and on about these kids. Even Payton with all of her special needs, is still considered on the mild end of the spectrum for Aicardi. She can sit up by herself, she can feed herself, she plays with her toys, she knows some sign language, she is so easy going and never really cries, she really is so easy to take care of. I know that there are some of you who are thinking that it is still a lot dealing with it all, and I am not trying to say it isn't. Today however I was just reminded to be thankful for what I do have and stop worrying about the things that are out of my control.

I am thankful that I am able to stop and count the blessings that God has given me even on days when I am feeling overwhelmed and unsure how I will keep going. God is always holding me up, he gives me strength when I feel completely weak. I stopped today to pray for all of the girls and all of the families that are going through so much, who aren't sure they will have their child in their arms tomorrow. Again I was reminded that this is all in HIS hands. His plan is so much greater than anything we can even grasp.

Introducing our Blended, Blessed and Crazy Family

So I guess this first post should just be an intro into our life. First there's the kids, and there's a lot of them, Katie is 13, Robert is 12, Ian is 11, Andie is 9, and Payton is 3. Then there's the hubby Ryan and of course me Tanya (where most of the crazy comes from) . So this blog is going to just be a glimpse into the life that we have made and continue to work on. We have our good days and our not so good days. My older kids are quite an eclectic mix....Katie is not your typical teen. She likes to read, and knit, and sew and would rather hang out with her friends than have anything to do with a boy. Robert is my little man, he has Aspergers but is very high functioning and has made leaps and bounds in his behaviors in the last 3 years. Ian, he is at that age where the louder you are the more fun it must be and I sure hope it passes quickly. Andie is my mini-me, she is the spitting image of her mother looks and attitude. I can feel the many battles of who is more stubborn already beginning with her.

Then there is my baby Payton....Payton was born June 20, 2010, after an uneventful pregnancy, 6 hours later she turned blue and was rushed away to Children's Hospital in Denver over 2 hours away. She was diagnosed with a major heart condition and when she was 2 days old she had open heart surgery. During this surgery Payton suffered a stroke. After almost 5 weeks in the hospital we were finally able to take our beautiful baby girl home. When she was almost 3 months old she started having seizures, up to 20 a day, which at the time Dr's thought were related to the brain damage that she had suffered during the stroke. After spending lots of time in and out of Children's Hospital in Denver, months of testing and more medication then I thought that one kids could ever take, she was eventually diagnosed with Aicardi syndrome. This is a very rare genetic disorder where the corpus callosum is missing from the brain. This is the part of the brain that lets the right and left side talk to each other. Dr's have told us that Payton will probably never walk and will always have severe developmental delays. We are hopeful that she will beat the odds and someday walk on her own. She has already shown all the Dr.'s that she will write her own story, and has already done so much more than they thought that she would. Ok so I rambled on a bit there about her story but it was a life changer for the whole family. I am looking forward to sharing an eclectic mix on here, from our ups and downs, to some of the other crazy things we do around here. I am a Pinterest addict (should be some kind of 12 step program I am telling you!) so I am sure my Pinterest nailed and failed its will make it on here too. Look to see regular posts on here...at least weekly and I look forward to seeing lots of comments from all of you too!!