-5 and Si says HI!

Good morning to all!! We had to share this video with you of our encouraging moments! I didn't feel really well this morning. The nurse started me on TPN ( the nutrition IV) last night because I wouldn't eat much, but I can still handle a bag of baked chips! I love them, it's the only thing that I will even try right now. This morning at 4:00am they gave me my first Busulfan ( another chemo). It went pretty good till I woke up and I felt yucky! I even choked and threw up all my oral medicine. I couldn't get down the medicine that keeps me from having seizures, so please pray. The doctors are ordering my medicine to go into my IV (I'll still have to take 1 in my mouth, yuck), I won't get those till 12:00. At 11:00am I got my 2nd dose of Busulfan ( I get this every 6 hours for 4 days), and I was able to eat a little chips and now have some energy. The Lord is so good! I had to show everyone on my video how much better I feel right now. Thank you all for your prayers!

-6 days (& counting)

Hello to all,

I have had my fourth day of Chemo (last day of Cytoxin) and still doing well. Yesterday after my 3rd chemo I got a little sick and lost everything I had eaten for breakfast. I am not too hungry since then and shake my head at food. I did eat a little for supper last night and a 1/2 of a banana for breakfast but nothing else. The Dr. said that if I continue to not eat I will need a nutrition IV put in. I need to keep my calories up so I continue to have strength and energy. So far I still have some energy and love to get out of bed and play ball or color. I love crayons and coloring. I love to dump the crayons and put them back into the box almost as much as actually coloring. :)

I also start a new medicine (among the many) tonight to help keep away seizures (Keppra). The next four days of Chemo (Busulfan)is different then the one I have had the last 4 days. The Dr. told mommy that the new medicine is known to cause seizures. So please pray that my body continues to work with the medicine and I can get better.

I am a little more tired and pale but I am still SI who loves to watch shows, play and clap. Mommy and Daddy are still really encouraged at how well I am doing so far and continue to pray for strength and energy for everyday ( for mommy and daddy as well as Si :) . Thank you for your comments, prayers and encouragement. It is really nice for Josiah and the whole family to know that ya'll are here with us. God bless ya'll!

P.s. If you want to keep up with my friend Torie please visit her blog at www.toriebrady.blogspot.com

-8 days (& counting)

Hello,

Just wanted to tell everyone how wonderful I am doing!! I came into the hospital on Monday. They let me leave and have dinner with my family for a couple hours since I didn't get any chemo yet. I came back at bedtime and then on Tuesday had my first Chemo. The nurse in the picture has to put a full outfit on just to give me the Chemo. The medicine just goes directly into my line. It went really well. They have to give me extra fluids to flush out my body because this specific Chemo can burn and make the bladder bleed. So they want me to have lots of wet diapers and if I don't they have to give me medicine to make it all come out. I have only had to have that medicine 1 time so far. Praise the Lord! The Dr. said if I didn't get sick after the first 3-4 hours that I probably won't. Now the Chemo can cause other problems down the road, but we are trusting in God's grace one day at a time. So far I am doing well!

I have had my second Chemo (Cytoxin) today (Wednesday) and I am still doing really well. Daddy said that I wouldn't eat at breakfast and we thought they would have to start a feeding tube but I made up for it at lunch. As you can see I had some pizza, Tatar tots and yogurt. Before that, I finished a whole banana and some cheerios! I don't think the tube will be needed! :) The Lord sure has been good to me. Mommy said that every time something seems to come up the Lord takes care of it. When I wouldn't eat, a couple hours later I ate. When my fever started going up, the next time they took my temp it was back down. In these pictures I am in my bed but I get to get out and play on a floor mat. A nice lady even came in and played ball with me around the room, I had lots of fun. I have had energy and the Dr.'s keep saying they are surprised but just wait. We give God all the glory and trust that He will continue to shock the Doctors (for the good)!

I love animals and a nice lady gave me a doggy. Here I am petting my new friend. I hug and love him. I am charming all the nurses here and they are all very kind. Even though I would rather be home. The Lord has made this part not so bad. Thank you all for your prayers. We will look forward to bringing you many more good reports. We love and miss you all!

P.s. Please pray for bubby (James), he is my donor and my best friend. I miss him and he misses me really bad. He doesn't understand what is going on and he is really sad a lot. Please join us in praying for peace for him. Thank you! :)

-11 days and counting

Dear Friends,

I hope ya'll have had a wonderful weekend. We had lots of fun going ice skating, to "the General Store", visiting good friends, and lots of eating out. The part I loved the best was doing it all together as a family. We praise the Lord that I have done really well so far and pray that I continue. I go into the hospital tomorrow and continue my treatments of Chemo on Tuesday. We pray that I stay healthy through all of this. Mommy will try and put short updates in the days to come but we don't know how it will go. In the mean time we would like to share some of our pictures with you of our adventures of the weekend.

Thank you for your prayers and we ask you to continue. We miss ya'll and love you! God bless!

-14 days (& counting)

Hey everyone,
Just wanted to keep in touch. Grandma and Grandpa came to visit last weekend and I got to get out of the hospital on Sunday. Just in time to have some fun with my grandparents. We went to Mall of America on Monday and went on a lot of rides and went out to eat. We had so much fun. Then on Tuesday I had my 17th ERT and it went really well. Thank you all for your prayers, please keep praying. :) Now I am back at the Ronald McDonald house just taking it day by day. I go into the hospital to stay on Monday Jan.25 to finish my Chemo. Since I have all this time off we have been doing things with James and my sisters to have fun before I go next week. I have been enjoying just exploring and even helping mommy vacuum! Thursday night we all went and played bingo and everyone won a prize... movies, toys, blankets, Pa-Paw even won "pass the pigs" game.

Couple of our friends and family have sent us cards and packages, I just wanted to say THANK YOU! It's so nice to get stuff from home reminding us that we are loved.... we love you too!

There is a really nice man who founded an organization called "Hope Kids". They are the ones who gave us the shirt and hat that James is wearing. It's actually mine and its for when I loose all my hair. They sent everyone including mommy and daddy shirts. They help encourage those who are really sick to still have HOPE. There is always hope in Christ. They also provide fun stuff for us to do... Like going to movies, pro sports games, gymnastics... all kinds of stuff. Lots of fun! :)

Also, I am sending everyone a picture of my friend Tori. I have asked for prayer for her before and she is doing really well right now. She goes into the hospital the same day as me and she will have the same "UN"Birthday as me (Feb.4). She has Hurlers and is only 2month younger then I am. On Sunday her and her grandma are getting their beautiful red hair shaved off since it will fall out anyway... we know it will grow back. Please continue to pray for her as well.

May God bless you through good and bad, and always remember there is Hope, Hope in the Lord. I have to remember this everyday and I pray that you do too. Love to all!

-18 days and counting

P.s. note on bottom.


Just wanted to tell everyone I am doing some better. Yesterday after my 2nd Campath injection I did fine till about 2:00pm. Mommy put me down for my nap and I woke up a few minutes later really sick. I had a temperature of 101, wasn't breathing well, and shaking from the fever. By the time mommy and daddy got me to the Dr. I was throwing up and had a fever of 103.8 (with Tylenol). I had to stay at the hospital and they gave me lots of medicine to help me. I did feel some better but kept my fever at 101 most of the night. Today I have seemed to do better. My fever has gradually come down and I had my 3rd (and final of this medicine) injection around 12:15. I seem to be doing so well that the Doctor told mommy that I could get out of here around 7:00pm if no fever higher than 100 (right now I am 98.8, yeah!). We just Praise the Lord moment by moment.





I hope I get to go home(R.McD House) tonight because Grandma Linda and Grandpa are coming for a visit tonight and I am looking forward to playing with them.





Thank you also for your prayers for my friend, Torie. The day she had a bad reaction she got better really quick and didn't have to go to the hospital. Her 2nd injection went really well too, and I have not gotten to talk to her today but we trust that the Lord kept her through it as well.





There is so much sickness and death here that we cling to all rays of hope. We continue to pray that we will be salt and Light in this place and He will use us being here for His glory!


Thank you all for your prayers and support, everyone is so encouraging! May God bless you all!

P.s. Since we wrote this post Josiah has gotten a fever of 103, needless to say he is not going home tonight. We trust the Lord is in control of all things.

The long journey has begun!

We praise the Lord for He is good, His mercy endures forever!

Thank you so much for your prayers for me today, I am doing great!!! Just to let you know a little of what we learned this week. The doctors told mommy and daddy that my eyes are really good and that I won't need glasses! We also learned that my heart,lungs,and brain have some buildup from my Hurlers but that I can go ahead with my BMT. The doctors are a little concerned about all the lung problems I have had in the past but we will just keep praying (even though the doctors don't seem to understand about prayer). My ENT dr. said that one of my tubes in my ears is not working but they don't have to do surgery on it right now. So we are going ahead with my BMT.

Today I received a medicine in my leg that is the first of three injections I will get over 3 days. This is the first medicine in my long journey (its like a Chemo drug). They said that if you don't have any side effects on day one that you probably wont have any problems the other three days. The Lord blessed so very much and I have done great today. I came home and had a nap and been playing with my sisters and James. I also have had fun with Pa-Paw who is staying with us right now. Please pray for my friend, Torie. She is a girl only a month younger then I am and has Hurlers syndrome. She is on the same track that I am and we will have the same un-birthday( that is what they call the transplant day, Feb.4). She had her first injection of Medicine today just like me but she had a bad reaction and is VERY sick. I really enjoy playing with her and having someone like me here, but please keep her and her family in your prayers as well!

We will have visitors this weekend, I am so excited! Not just any visitors, my Grandma Linda and Grandpa are coming. I will get to play with them this weekend and all of us are counting the days till they get here. We sure miss everyone.

After these three days (Thursday, Friday and Saturday) I will have my Enzyme treatments once a week and limited Dr. updates but otherwise I will have a break till Jan. 25 then I go into the hospital to stay till I am better. I have the transplant if all goes well on Feb.4 and then we wait to see how the Lord will heal my body. Thank you all for listening about my journey and praying for me. It's very encouraging for me and my family. We love you all and miss you, Goodnight!

We are Home (at the Ronald McDonald house)

So sorry that is has been so long to say Hi... it's been a busy few day. What was suppose to be an overnight in the hospital turned into 3days. My breathing was bad because I still had swelling from the tests during my surgery and then I had reactions from my ERT the next day. On Thursday at 8:00am they told me I could go home(by home I mean the R.McDonald house.. which will be home for awhile), and by supper is when we left. Even though it was late it was nice to sleep in my own bed. I only had I Dr. appointment on Friday to see how my heart was doing. The Doctor told me I was pretty severe but not to bad for Hurlers and gave me an OK to continue for BMT.

Saturday we got to go to a place that showed movies on a really big screen TV, it was my first time and I loved it (saw Chipmunk movie #2). At least I thought it was fun for awhile and then just fell asleep on dad. We came back and took naps for an exciting evening .... my sisters Hannah and Leah are coming! We all miss them so much!

We have another busy week, if all goes as planned I will start my Chemo this week.

We miss ya'll and hope everyone has a wonderful weekend!

James slept in a corner at the hospital for his naps. :)

Hello everyone, I am a little groggy but mom wanted to let everyone know that I am doing OK. Yesterday I was at Doctors appointments all day again and got back to the Ronald McDonald house for a late nap. We got up early this morning and I wasn't able to eat any cereal... I didn't like that to much because I was so hungry. Dad and I left to go to the hospital and I was in surgery by 11:00am, daddy was able to go back with me when they put me to sleep so I wasn't so scared. The Doctors looked at my eyes, my heart, took samples from my lungs and put my port in ( that is the tubes sticking out of me, they go straight to my heart). The Doctors said over all everything looks really good but I still have a little swelling in my airway so I have to keep the tube in over night. They give me medicine to help me sleep well and keep me from pulling out all my tubes. Hopefully I will get to go to my other appointments tomorrow and get to go to the RM House Wed. night. Thank you all for your prayers and please continue for this is just the beginning of our journey. Love to all!