What a blessed sabbath!

Sunday morning was great. I was able to get to both meetings I was supposed to attend. It just feels good at this point to be able to achieve normal tasks. I was able to be surrounded by the YW ladies that I love and then the girls that I love. Overall a great morning until I got home and saw that Tatum was having a lot of seizures. I waited for a bit and then I emailed her neurologist to see if we could tweak her medications  within about a half hour she settled down and we decided to take her to church. We have YW first and it was on the Atonement! Perfect lesson to remind me that through the Savior all will be made well again and that He has given us an escape from the awful monster of death.  By the time we got to sacrament meeting Tatum was smiling at everyone and then she started cooing and making noises that she hasn't made for almost three weeks. It could have been my horrible singing that was inspiring her to make sounds but I like to think that she was feeling the spirit. I am positive that she can see things that we can't. I am sure her ministering angels were there. I am also sure that she felt everyone fasting and praying for her. It was a great day. After church we ran up to our brother-in-laws for dinner with some of his family to break our fast together. It was a delicious meal. I was so grateful for the strength I was blessed with during the fast so that I could participate. Another prayer answered. God is good!

As I am sitting here typing Tatum is laughing and making the cutest noises because Hilary is being silly. What sweet gifts we have received these past few days. Every second is a real blessing.

Tatum goes tubeless!

Life is never dull here at the Walker's.  We had just your average crazy Saturday with the kids going about there daily fun, riding bikes, sledding, playing with friends, CLEANING ROOMS, babysitting, etc.  Lance and I were going to take Tatum on her first big adventure since she was in the hospital.  We were going to a wedding reception for a co-worker up in Salt Lake City.  We started to get ready and Tatum's feeding pump gave the signal, NO FLOW.  Nice timing, right as we were walking out the door!  (it actually would have been soo much worse to get all the way to SLC and then realize that she could no longer get food, yet another tender mercy in the life of Tates) So I started messing around with the tube and decided that it really was clogged.  I tried to pull any clog that I could out with a syringe.  Didn't work.  I called our pediatrician and she suggested to try and pull with the syringe again and then put a little Coke down the tube.  Exciting for Tatum, her first Coke at 9 months!  And we don't even live in the south.  Luckily she only has two teeth to rott:)  After a few minutes we were able to get the clog out.  High fives for mom.  Just like that we were on the road.  Up to Salt Lake and back and no troubles.  Tatum seemed really unimpressed with the whole trip.  We got home and I went to get her out of her car seat and I heard a ripping sound, just in time to realize that her feeding tube had hooked on her car seat and it was now about 70 percent out of her!  Because her tube goes into her small intestines, there is no way to just feed it back in.  Now we had to just pull it the rest of the way out and call the Dr.  Nice one mom!  So immediately we took pictures:) Tubeless Tatum:

 So we had to run down to the hospital, by now it is 9:00.  The man in radiology was great, got her tube in quick and Tatum was tough as usual.  Then we went to Labor and Delivery and visited with our nurse friends.   It was great to see everyone, and for them to be able to see little Tatum.  We are certainly all on this journey together.  That was our exciting day.  You just never know what is around the corner with this little cutie.  We sure do love every second we get to spend with her, as does Hilary (shown above in picture 2)  We will let you know what adventures we have tomorrow.

Tate's is getting a g-tube

Tatum goes to Primary Children's Medical Center next Friday to get her permanent feeding tube. I am terrified for her to go under anesthesia and I am afraid that her  stomach won't work since she hasn't had food in it for 2 weeks. We are taking this fast Sunday to concentrate our prayers for those two things and we would love for anyone who wants to join us in that effort.

Yesterday was a pretty good day. I was able to get lots done. I even stuck a yummy dinner in the crockpot, made roll dough and a jello salad. Then I made a cake for Holden to decorate for the blue and gold banquet for scouts. Then I remembered that we would be eating dinner at the banquet! Dang it. Oh well it still felt good to do normal things:)

The beginning

To start this blog off I felt like I should tell some of the beginning of Tatum's story before we get into the day to day life and happenings because not everyone knows what happened on February 12th. I am not a great writer so forgive me.  I never had a desire to do a blog but so many people have shown interest and love to our family.  This was the quickest way to get information out to everyone. So here we go.   Since Tatum was a little baby she has had such a sweetness about her. She also always has had trouble gaining weight. We hoped that it was just because she was a walker. At about 4-5 months old I started noticing that she was delaying developmentally, not rolling, sitting, bearing weight on her legs, etc. At about 6 months we started feeding her through a bottle to see if that would help her gain weight. In the middle of December I took her to my pediatrician and started asking about her tone and development. We had a conversation about the similarities between her and our oldest son Trevin. That was the first day that I really let myself begin to accept the fact that she could have the same disease that he had.  A few weeks later we went to a neurologist who did an MRI and sent off genetic testing.  It seemed like time was dragging because we had to wait 3 weeks for the test to come back. Friday February 9 Tatum was admitted to the hospital for what we thought was the flu. She went home on Sunday then we had an appt up at PCMC on Monday  the GI doctor mentioned that kids with mitochondrial disease have throwing up episodes and since she had no other symptoms of flu it could have just been a symptom of the disease. The next day, Tuesday February 12th, was normal. Tate's looked so great. Bright eyed and smiley. We went to our workout class in the morning then when we got home I got her out to feed her and I noticed a rhythmic tick in her leg. I hurried and got ready and got her and Hilary into the car. I called my doctor and told them she was doing something weird. By the time I got there the tick had traveled to her arms. My doctor took one look at her and said lets get to the hospital. By the time we got to the hospital she was in a full convulsive seizure. It lasted for three hours. This is exactly how our son began his journey with Alpers syndrome so we knew at that point what the genetic tests would show. There have been a million tender mercy's along this journey. Prayers answered, etc. now you are sort of up to date. Sorry so long:)