Thursday, May 14, 2009

Dillon and China updates

Dillon did aspirate and had pneumonia again. He was started on antibiotics on Friday but was not making any improvements. Tuesday Dillon was very very sick - we thought we were going to have to take him to CHOP, but then all of a sudden he started doing better! Praise the Lord! We did not have to take him. He is still sick, but he is doing much better!

We now have a "cause" on facebook for Dillon for his stem cells- basically it is being sent from person to person to raise awareness to Dillon's need for Stem Cells. In less than 3 days we have 266 members! I also now have a "chip in" on my blog where people can donate via paypal or credit card. I just put that on last night and we have raised $50 (ok - so 2 of the people were family and only 1 was an non-family contributor!) But no matter who it is coming from I am so thankful for people's generosity!

If you don't normally stop by the blog, please do. There is also a BRAND NEW VIDEO on it for you to see. If you don't come to then please click here to see the video I made today called "Dillon's Journey - From Birth to Stem Cell Treatments"

Please keep praying! Thank you!!

Thursday, May 07, 2009

Pray for Dillon

Hello Everyone,

Please lift Dillon up in prayer right now. He was having a lot of secretions tonight and the last day or two has been very limp during therapy. Tonight he felt warm to me so I took his temp and it was 102.6. He then threw up and went into a 20-25 minute coughing spell which means he aspirated again. We have called the doctor so they are aware of it. As long as his temp and respiration/oxygen levels stay good during the night we can wait till morning to take him to the doctor. When I counted, his respiration's were at 30 which is a good number. His heart rate is 180-205 though which tells us he is sick. He is sleeping upstairs in his bed right now on 3 liters of oxygen with his CPAP (his normal oxygen level is 2 liters) his heart rate is in the 180's even though he is sleeping. :-( Poor Baby...

This means they will put him on Augmentin (antibiotic) tomorrow which always causes a very very bad diaper yeast rash that makes him bleed and blister so please also pray that it won't be too painful for him this time.

Thank you for your prayers. I appreciate it - and I know Dillon would thank you if he could! I feel so helpless for him - I wish I could take this away, I wish he didn't have to go through this all the time, I don't like to see him struggling. But - he is in God's hands and I know that I must learn to trust and depend on Him during these times.

Wednesday, May 06, 2009

JayDonn and my redecorate project

My redecorating project while my mom was here and I had extra help... the bathroom. I forgot to take a picture before I started so I took the picture of the little room outside the bathroom which shows what was on the walls before I started. It was some weird (old!) pattern paneling on top and wood paneling on the bottom in an already pretty tiny little area....

I painted all the trim white and the walls a copper color. These are my first curtains that I have ever made. A friend gave me her sewing machine to use and I made them in 4 hours! It was a lot of fun and I love our bathroom now! It used to be my least favorite room as far as decor - now it is my favorite. :-)
JayDonn is so smart - this video shows him saying the word BEFORE he hits the button. He started doing this for us last night and I had to get it on video!

Click HERE to see it

Monday, May 04, 2009

Long past due...

This update is long past due as there has been a lot going on around here in the last few weeks. First of all, my mom had to go home a little early but I want to thank her for all she did around here. She helped with dishes, laundry, caring for the boys, stayed on top of getting Dillon's therapy done and did great at keeping up with it all. Thank you for coming and helping us, we are looking forward tot he time when you and Dad are able to move closer. The boys had a great time with you, too.

We are over half way to our goal for umbilical cord stem cells (aka adult stem cells) in China! I am amazed that God has brought in this money. Let's face it, I know the economy isn't the greatest - yet people are still willing to give to help Dillon go to China! What a blessing! Dillon's story is being translated into Chinese right now by a sweet lady in my church. We applied for passports just over a week ago so they should be coming in soon. We are just waiting to get the rest of the funds and then set up the date with the hospital in China and we will be on our way soon. I have no idea how much progress Dillon will make from this, any little bit would be a miracle to me! If his seizures would decrease from 30-40 a day to few enough that he wouldn't need drugs, or if his brain would be able to start using his vision so he could communicate with me, if he could learn to swallow his own secretions, anything would be a miracle. Doctors here offer me no hope - there is nothing I can do for him. I have been doing therapy with him everyday day for 360 some days - about 5 hours a day - and while we have seen some improvements he is not making huge progress.
(To see what the therapy is that we do with Dillon, click here to read descriptions and videos of each thing. )

I want to know that I have done everything I can possibly do to help Dillon, I want to be able to tell my son, I have tried everything I could try. I don't want to have any regrets of well what if I had only tried this...would it have worked? I want to thank everyone who has given towards Dillon going to China - please know that if Dillon makes progress you had a part in helping us go and you have a part in his progress. And if Dillon doesn't make progress than you helped this Mommy to have peace of mind that at least she tried! We will trust in the Lord that His Will will be done. If God wants to do a miracle in Dillon and heal him in some way we will give Him the Glory for it all. If He chooses for Dillon to not make progress then I have finally learned the truth behind the verse "For all things work together for good to them that love God..." I know God is using Dillon - using ME - to help other families. I don't know how all God will use me - but if our lives bring someone to the cross it is worth it. There is a song that talks about if just one more souls is saved it was worth every mile. If one more person can see that placing their trust in Christ alone for eternal life, that good works can't save anyone, that our sin separated us from God and we have to accept Christ's shed blood on the cross for our payment of sins...then it will have been worth every mile. If you are reading this and do not know what I am talking about, if you have never changed trusting yourself and your good works to get you to Heaven to trusting in Christ alone - please email me. I would be happy to explain more to you.

Before I go I wanted to put an update on my little Jay boy too! He is talking so much now - he has about 80-100 words that he uses as well as some pharses now. He is also potty trained (he still has diapers for sleeping time and when we are out) but tonight for the first time he went on the BIG potty rather than his little one. It won't be long now and he will only be using diapers at night. He is such a big help with Dillon - he cheers for him, kisses him, tried to push him down the ramp when Dillon isn't doing it on his own, he tried to drag the heavy suction machine to me if I ask him to, etc. I love this little boy so much. He has brought so much joy to my life. I am so thankful God gave him to me! I love you JayDonn!

Well it is late and I need to get my kiddos to bed, I just wanted to update on the China trip and let everyone know where we are at with it at this point! Thank you for praying!