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.