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!!