Day 4

Today we are praying for Seton’s Brain Development. Please pray for complete growth and healing of his brain, spinal cord, neurons and nerves.

Today the post is short because Mondays are my days alone with my boy, so I am off to snuggle with Seton.

I pray that you all have a wonderful week. Thank you for your prayers! 

“I have come that they may have life, and have it to the full.” John 10:10

Day 3

Motor control, that is our prayer focus for today. Please pray that Seton’s brain develops in the right areas so that he can control his movements. Right now he works so hard to get his right hand up to his mouth so that he can try to ease the pain of teething; he usually ends up scratching his face in the process because he just can not seem to make his hard go where he wants it. He was using his both arms about the same, but in the last week or so he has only been using his right and has been tucking his left arm back behind him and keeping it straight…that makes for a fun time when trying to change his clothes J. He has an occupational therapist and a physical therapist that he sees every other week to help with his muscle control, we also perform range of motion exercises and stretching 4-6 times a day to help with his muscles.

“I can do all this through Christ who gives me strength.” Philippians 4:13

I just have to show you all his hair this morning! He had some serious bed head after a pretty good night!

Please say an extra prayer for Tessa Rayne and her development today.  

Thanks again for all your prayers!

Zane, Shawna and Seton

Day 2

Today I want to pray for Seton’s digestive system, mainly his suck/swallow reflex. The doctors and nurses early on told us that he did not swallow at all when they watch him under radiation. This has improved some he can swallow some of his secretions. We see a speech therapist every week and she works with him with a bottle of water or milk, he can swallow some of what we squirt in his mouth but will not suck on the nipple at all. He has tried to chew on the nipple, but that is not a frequent activity either. In order for us to try to feed him any real amount by mouth, he has to pass a swallow study at the hospital. If you want to know more about this study, I have attached an explanation of a swallow study below from Childrens Memorial Hospital in Chicago, Illinois http://www.childrensmemorial.org/depts/rehab/swallowstudy.aspx.

Seton had a swallow study several months ago and he did not pass, all he would do is push the food to the back of his mouth and then up his nose, where we suctioned it out. He did not fit in the chair very well and it was not at a good angle for him to even hold his head up.  

As for the sucking ability, I only remember seeing him suck on his pacifier twice. One time was the day after his g-tube surgery (when he could not eat for 2 days) and the other time was early this past Wednesday morning when I was trying to calm him down…he was screaming in pain from his top front teeth that were trying to come in. Yes I did say teeth – he got his 2 front top teeth this week (no bottom teeth yet but I don’t think they are far behind.

Sleeping away Wednesday night  -- Notice his pacifier ;-) 

We have 2 friends whos kids also need prayer for their digestive systems, Marley Kate and Brecken Layne. Please say an extra prayer for these babies and their parents.

First walk of the season

 It was too nice outside on Thursday night not to take Seton out for some fresh air. 

Thank you all for your prayers...he had a pretty good night last night. 

Zane, Shawna and Seton 

²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, ²¹ to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.  Ephesians 3:20 -21 (NIV) 

Videofluoroscopic swallow study (VFSS)

• A swallow study is a procedure used to test children experiencing difficulties with feeding and/or swallowing.
• The swallow study is performed in the medical imaging department with a speech-language pathologist and a radiologist. Special equipment is used to provide a "moving x-ray" of the child's swallow.
• During the test, the child is placed in a chair next to the x-ray equipment. The speech-language pathologist feeds the child a variety of foods mixed with barium. The barium makes the food visible during the x-ray.
• The speech pathologist closely watches the x-ray to see how the food and drink move through the mouth and into the esophagus during drinking, chewing and swallowing and watches for any signs of aspiration (when the food or liquid goes "down the wrong way" into the airway).
• Once the test is complete, you will be given recommendations about feeding strategies and changes to your child's diet if needed to decrease the risk of choking or aspiration.

http://www.childrensmemorial.org/depts/rehab/swallowstudy.aspx

Day 1

Today we are praying for peaceful, restful sleep at night for Seton, for some reason he can sleep great during the day?? He has a continuous cough that wakes him up all night long. Sometimes he is able to go right back to sleep, other times he needs suctioning, and sometimes he just gets upset and can not settle back down. He is also teething and this causes more drool and secretions that sometimes he can not swallow correctly, which causes more coughing.

“Come to me all who labor and are heavy laden, and I will give you rest.”  Matt 11:28

Blessings to you all and thank you for your prayers,

Zane, Shawna and Seton

We have several friends with sick kiddos also, would you all send up an extra prayer of healing for them. There are too many to list names. 

50 Days of Prayer

Over the next 50 days leading up to Seton's 1st Birthday I will be writing a blog post of specific prayers for Seton and his healing. I will start tomorrow morning with 'Day 1'. I will try to have them posted by 10am daily, I am not as punctual as Zane but I will do my best. If you want to join us in prayer for Seton's healing, please do. I will be praying everyday all day, as always. We will be also be praying over him as we put him in bed at night between 9:00-9:30 (That is the only consistent scheduled time for us). 

I am just guessing but ... some days they might be long and more specific and other days they may be as short as one sentence. I hope this will help all of you that want to be more involved in the healing prayers for Seton and it will give you all something specific to pray for daily. 

"So I say to you, keep asking, and it will be given to you. Keep searching, and you will find. Keep knocking, and the door will be opened to you." Luke 11:9

Thanks for praying!

~Shawna~

10 Months Old

This past Monday, Seton turned 10 months old. We have not updated in a while because there really is not much to update. We are finally getting into the stride of our new life, what Zane calls “the new normal.” Seton has therapy appointments twice a week, with a speech therapist every week, occupational and physical therapist every other week. We only have to go see Dr. Habersang every other month, unless something goes wrong (like his mic-key button leaking, which happened this week).  

It was a year ago this week when we first found out something might be wrong with our baby boy. And our journey of seeing specialist doctor began. What a way to start out 2011… a year that I am very glad is OVER.

We took Seton to meet Santa at Santa Brunch at Amarillo Country Club this year. Seton got to meet Santa and Mrs. Claus. 

In Santa's Sleigh with Landon and Gracie

Meeting Santa with Landon and Gracie

Mrs. Claus & Seton

We had a very Merry Christmas. God decided to bless Seton with a white Christmas for his very first Christmas. It was perfect. We still loaded him and all his gear up and took him all over to different family gatherings, but Christmas Eve and Christmas morning we sat around in our pjs and just spent time together as a family of three. Having just the 3 of us happens so rarely in our house, and we really enjoyed it. Seton loved looking at the lights on the Christmas trees and garland around the house. I really hated to take it all down. Here are a few (or several) pictures…

Staring at the Christmas lights

My Little Santa

Hanging out with his giraffe Christmas Morning

Looking out at the White Christmas

Our Family

I hope you all don’t mind me sharing some of my thoughts…

When people ask me, “How is Seton doing?” I really have a hard time answering that question. Don’t get me wrong, I do not mind being asked. Sometimes I just have a hard time answering. If you ask when Zane is with me, I usually look to him to answer (I am not much of a talker). The other 10% the time I say, “He is good” or “He is okay,” without much more detail. Do you really want to know that I was up all night because he can’t get over this crud, or that he cried most of the night for unexplainable reasons that I chalk up to teething…even though he does not have any teeth yet? I cannot talk about my fear of him never walking, crawling, eating, playing, or even smiling.  Yes, it is a miracle that he is alive and gaining weight. Overall he is doing well. He made it through his first sinus infection/ flu.

Then people ask, “How are you doing?” I have a hard time answering that also because I do not talk about my pain or my troubles. No one needs to worry about me. No one needs to know the pain I struggle with daily. Do you really want to hear me talk about how I was up all night listening to the baby monitor to make sure Seton was still breathing, or that I saw an adult driving his wheelchair down 45^th street and had to pull over because couldn't quit crying because that is not the life I want for my son? There hasn’t been one day this week I have not cried while driving down the street. When I hear people talk about finally being out of diapers, I sit in silence because that may never happen for my family. I sit in silence a lot because I do not want other people to worry about me; I have always been “the fixer” not the one who needs “fixing.” I have a lot of negative thoughts in my head that I have to fight most days.

We had a calm New Years Eve; again just hanging out as a family…I think we were all in bed by 11:30pm. We are excited for the New Year and all God has planned for us. We might be the only family that had a baby last year that will not say it was not the best year of our life.  It was a difficult year, it had good times, and it changed our lives; but I am glad it is over. I can not believe how much we have changed and grown over the year. We made some really great friends this past year, and would not have made it without the help of our family and friends. 2012 is going to be a GREAT year for our family.

I don't know why God chose us to be Seton’s parents, but I am glad he did. I love that little boy so much. Do I wish things were different? Honestly, yes, sometimes I do, and then other times I could not imagine anything better.  We still expect a miracle of complete healing for Seton; and pray for it every minute of every day. I know God has a plan for us and that we are just in a difficult season right now. He has brought us this far and will continue to carry us through our journey as Seton’s parents, because we are not strong enough to do it without HIM.

This song is perfect for us. I have loved it since the first time I heard it last year.

 Matthew West - Strong Enough

 Here are a few more pictures of Seton. I have not taken any 10 month pictures yet, but I will post them when I do.

9 months old

I just love these toes! 

 ⁹ “And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. ¹⁰ For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.”    Luke 11:9-10 (NLT)

Thank you for all your prayers and support!

~Shawna~

8 Months Old

8 Months Old -- 9 months old next week

Where has the time gone…Seton is almost 9 months old.  So much has happened since our last update.

First Weekend without Daddy 

Zane went on the Men’s Retreat at church so we had our first weekend without Daddy. Zane’s mom came in town to help me watch Seton at night. We are still not at the point where we feel comfortable leaving him alone in his room all night.

Baby Dedication

The next weekend, we had his baby dedication at church. That was a great day. Our entire family and many friends were with us on this big day. After church, all 40 of us went to eat lunch at Pescaraz Italian Restaurant. This was a big milestone in Seton’s life; he has not had many milestones that normal/ healthy babies hit. This was a day that in the back of my mind I was not sure would ever happen. Seton was on his best behavior in front of the entire church and slept through the sermon and all through lunch.

Here are some pictures from that day…

Halloween

Every year my parents church, Southwest Church of Christ, has a ‘Trunk or Treat’ around Halloween. It was nice outside this year so we dressed Seton up in his Sock Monkey costume and headed out for Seton’s first Halloween. We met my parents, my sister and her kids there. I think my parents really enjoyed having all their grandkids there. Seton of course can not have any treats, so I got a few for myself so that Seton could enjoy some sweet milk the next few days. J Seton got to meet several people that have been praying for him. Here are a few pictures of the cutest Sock Monkey in the WORLD!

First weekend without Mommy

I was able to take a trip with some dear friends of mine for the weekend. I set up for my parents and some of our home health nurses to be here more to help Zane watch Seton while I was gone. There was no way I would have gone if I was going to have to come back to an exhausted husband and baby. It was definitely hard for me to leave but I had a good time once we got out of town. The girls I traveled with put up with me and my need to pump every 4 hours, always being hungry and ready for our next meal, my driving, and not needing much sleep. Thanks Ladies for putting up with me! I had a great time but it will be a while before I will be able to leave my boys again. 

Doctor Appointment

Seton had an appointment with Dr. Habersang the week before Thanksgiving. He weighed 16lbs. 15.2 oz. and is 26.5 in tall. The best news we got that day was that Seton no longer needs his oxygen…during the day or at night!! He is gaining weight and growing so we also get to stop supplementing his breast milk with prosobee (a sensitive stomach formula to increase the calories of breast milk).  The appointment was full of good news.

We have so much to be thankful for…

Every Thanksgiving morning since I was little I have gotten up to watch Macy’s Thanksgiving Day Parade.  So last year when I was pregnant, we sat as a family, and watched it in our pajamas. So this year we did the same, Seton sat in my lap and we all sat on the couch to watch the parade then as soon as Santa came down the street we loaded up and headed to my parents’ house. We spent the rest of Thanksgiving Day with my parents’. We had a traditional Thanksgiving dinner with a big turkey and all the trimmings; watched Football all afternoon. Friday we did not get up with all the dedicated shoppers…we had Thanksgiving in Dumas at Zane’s aunt & uncle’s house, where we stuffed ourselves with Mexican food! This was Seton’s first trip to Dumas and he did great! I think he really enjoys being in the car and looking out the window (just like I did as a little girl). Then, Friday night we had dinner with Zane’s Dad and Sister, no one wanted to cook so we went out to eat steaks.

I can pout with the best of them...

He got tired of waiting on everyone to finish eating...so He took a nap

Knock on wood…Seton has started his own tradition… Sleeping. Through. The. Night! Maybe it is just the turkey, but I think that this will continue and all of our family will begin to get more sleep.

Looking forward to Christmas

We put the lights up outside (bright red bulbs, Seton’s favorite color) and decorated the inside of the house too. I love Christmas and decorating for it! Zane told me the theme for this year is moderation…So I only decorated the main living area and the guest bathroom. So far Seton loves sitting under the trees (I put up 3 small trees) and looking up at the lights.

He is getting so big and changing so much so I will leave you with a few current pictures… 

Daddy take my picture!! My hair is finally long enough for a faux hawk

 ²⁵"These things I have spoken to you while I am still with you. ²⁶But the Helper, the Holy Spirit, whom the Father will send in my name, he will teach you all things and bring to your remembrance all that I have said to you. ²⁷ Peace I leave with you; my peace I give to you. Not as the world gives do I give to you. Let not your hearts be troubled, neither let them be afraid. John 14:25-27 (ESV)