1st Birthday Invite

On June 16th, 2007 Dillon will turn ONE! We Praise God for allowing Dillon to live and to make as much progress as he has. Please join us as we celebrate on Sunday June 10th, 2007. The party will be immediately following the morning service at Lehigh Valley Baptist Church. There will be sandwiches, chips, ice cream and of course – birthday cake! Service starts at 10:15AM. You have shared in Dillon’s life so far and we hope to see you here to Praise God with us for all He has done for Dillon this last year.

This is the invitation to Dillon's party (only it printed on white paper not black...) I left off the RSVP info too because I don't want to put our church address and my phone number on the Internet for anyone to get. But anyone who wants to come can!

Addictions

Are all addictions bad? I hope not. Here are my two addictions:
1. Brushing my teeth. This may sound strange and that is becuase it is! When I was pregnant with DIllon simply putting a wet toothbrush, even without toothpaste, in my mouth made me gag and nearly throw-up. Now I love it! I love the taste, I love how the brush feels, I just love it all. I am finding myslef brushing my teeth 3-4 times a day.
2. Internet. Ah, now tehre is a bad addiction you say. But my addicition isn't to surfing the web for jokes or games or anything like that. In fact, I usually don't have time to go to the blogs I really enjoy reading. My internet time is usually researching. I agree that the computer/internet can be bad, and it is bad if it stops you from taking care of house work and things like that. I'll be honest, sometimes it does prevent my house from being the cleanest. But what really is more important? Having a house that is spot-less or trying my hardest to look into possible help for Dillon? Knowing that I have done all I can do, that I have asked God to lead and direct me to things that might help, knowing that I am not jumping into all the suggestions I have been given without doing as much research as possible to the side effects, risks, and outcomes of different treatments is what is important to me. I thank The Lord that I have a husband who understands and encourages me to help Dillon, even at the expensive of dishes not being washed.

More on HBOT
This site is good - it lists the risks and side effects and tells the % for a lot of them. You will see they are all very low.
http://scuba-doc.com/tenfootstop/archives/684

VERY good artical on CP children and CP
http://renegadeneurologist.com/treating-cerebral-palsy-with-hyperbaric-oxygen-therapy/
They also have a group on this on called Moms United for Moral Support (MUMS) that offers 300 page packets on reseach studies, stories etc of HBOT used in brain damaged children for $25.

The internet is amazing. I truly am thankful for such a wonderful tool. Just think what it would have been like trying to reseach all this before the internet!

Walk 4 Hearing

Last Saturday we went on a Walk 4 Hearing. I never thought I would actually go to a Walk 4 anything! Josiah's compay was participating s of course we agreed to walk too. It was fun The walk was 2 miles (we culd have done 4.3, but 2 was enough).

This first picture is the back of the shirts they made for us to wear with the company name on it.
Mitch, far left, has severe hearing loss. His wife (not pictured) also has hearing los, but their 5 year old son does not. Next to Mitch is Matt, Alan (the head of the IT), Josiah, myself, and in the stroller hiding from the sun is Dillon.
The company raised over 900 for research and it was nice to go on a walk with some of the men Si works with.

We were able to hand out several of Dillon's tracts. I told Josiah afterwards - it was nice...no one gave Dillon tat "second look". No one thought anything of his problems. I think he was the youngest with hearing aids, altough there were several kids with them. There was even a little boy (about 2-3) with the implant. I did not personally see him, but it was the first time I have seen adults with the implant.

New Chair Pictures

Dillon's physical therapist gave us a chair to borrow. IF we would have bought this it would be 300-500! Praise the Lord! It seems to work well for him.


We can change the angle a little and clean it off easy. It is pretty light, just akward.

Possible Treatment?

I found this treatment in a magazine Dillon's vision therapist gave me. I am NOT saying this is something we are going to do, but I know family and friends like to know what I am looking into as far as treatments (since you all know this seems to be a favorite past time of mine - seraching for new ideas to help Dillon).

www.thejennyrosecenter.com Shows a little of what it is. Basically, you go into a tube for either 1 hour once a day for 40 days or 1 hours twice a day for 20 days. In this tube is 100% oxygen (room air is about 21%). This is supposed to help the brain and the cells. I am trying to do more reseach as at this Jenny Rose Center the treatments are $110 per treatment (total $4,400... I have seen that they tend to range from $150-$1,000 per treatment) so I want to know as much as possible about the research behind it. I know many people don't need to or have the time to look at these sites, but here they are for my future reference and for anyone who would like to look at it. The Jenny Rose Center is about 1.5 hours from me, I am also trying to see if I can find it closer to me.

Talking about CP children studied:
http://www.drcranton.com/hbo/hbo_proven_to_benefit_cp.htm

This one gives a basic intro to it including what it feels like for the person and talks about some of the side effects:
http://www.drcranton.com/hyperbar.htm

Research studies with neurological problems:
http://www.drcranton.com/hbo/hbotneurocond.htm

This one has the risks (scroll about half way down)
http://www.bmj.com/cgi/content/full/317/7166/1140

If anyone has heard of this, knows where I can get it locally, knows anyone who has done it, or anything that might be helpful please let me know.

Aren't we a sight?!?

Three of the five expecting women - 5 that I know of anyways- at our church in order of due date .These other two are first time Moms - so Happy First Mother's Day to them. And HAPPY MOTHER"S DAY to my mom, mother-in-law, sister (also pregnant), grandmas, and all the other moms who read this!

Tiffany (Due July 14th with JayDonn), Johannah (Due end of June with a little boy), and Becky (due begining of June - she doesn't know boy or girl)

Rolled Away, Rolled Away, Rolled Away...

You have all heard of the song kids like to sing and act out "Rolled away, rolled away, rolled away, every burden of my heart is rolled away." Well yesterday I had Dillon laying on the sofa on his back, he might have had his one shoulder up a little since he was against the back of the sofa. But when I came back in to check on him he was on the edge of the sofa...on his stomach! I have never seen him roll over or even left him one way and come back to find him another way before. I was all excited and took him out to tell Daddy and Daddy said he has actually seen him roll over in the crib before!! (???) That was news to me! So maybe he has been doing this, but it was the first time I have seen anything near a roll over. Josiah asked how it is that I am home with him all day and haven't seen it but he has. That is a good question!! I have no idea! God isn't done with this little boy yet. Just when I start to think that he might be leveling out and not going to make any more progress; God shows me just a little more! I think by the time I die I will either have learned patience or will be considered the most slow-learning person in history! I still don't get why God can suddenly, in a moment of time, instantly impart salvation to us but patience is something we have to learn. Why can't it be suddenly, in a moment of time imparted to us? :-)

James 1:4 But let patience have her perfect work, that ye may be perfect and entire, wanting nothing.

Count your blessings...

1. I do NOT have diabetes! Praise the Lord! I will have an ultrasound every month because of having asthma so they will see if he is just getting too big (which would be an indication that I developed diabetes later on...but it really isn't an issue anymore.)
2. There is nothing wrong with the placenta! My numbers being high at 17 weeks could have meant a problem, but they don't see anything wrong.
3. JayDonn is growing! He is in the 53 percentile and is 3 pounds 12 ounces!

What a blessing the appointment was to get such good news! I was able to hand out a few of Dillon's tracts. I gave one to the nurse at the front desk when I got there and when I was checking out she had read it and gave it to the other nurse who was trying to read it right then in between doing everything else! Pray for the people who get this - maybe God will use it to touch their hearts.

Thank you for all your prayers! God hears and is answering!

Call unto me, and I will answer thee, and shew thee great and mighty things, which thou knowest not (Jeremiah 33:3)

And the verdict is....

...COLIC!

The neurologist called me and after hearing that the increase in seizure medicine did not help and that I can hear his stomach making noises - he thinks it is colic. He said the colic drops that Dillon has been on rarely work. He wants me to take Dillon off the extra dose of Topamax, wait a week then take him down to once a day, wait two weeks then take him off of it completely! Praise the Lord! As long as I don't see any seizures, he is wanting to get Dillon off of it 100%! Especially hearing how his weight has been going up and down and that he hasn't gained any weight since being on it, Dr. H believes it is important to at least try getting him off. Dr. H said it is very possible we will see this stop when we take him off of some of the topamax, he agreed with me that there are so many stomach side effects of the drug which could be causing this. IF they do not go away after we get him off the medicine he may have to order an EEG - but it will be one where they will hook all the wires up to him at the hospital let him go HOME and run the test for three days while Dillon is home! If we have to have EEGs - what a blessing to know it will be at our home instead of being in the hospital!

Dillon's tract that I wrote of his life is going to be done printing this week, I plan to hand these to as many people as I can as it has verses on salvation and an offer for a Bible study. Dr. H is one that I will be giving it to in the near future - please pray for him as well as the numerous other people that will be getting this tract (the first printing is 500 tracts so they will be in the hands of so many people). What a blessing it would be to see someone saved because of how God has worked in Dillon's life. Will you add to your prayer list that we will many requests for Bible studies from this tract, and that we will see at least one soul spared from Hell? Many people tell me they don't know how or what to pray for Dillon - pray that his brain damage won't be in vain! Pray that his life will touch the hearts of those who are lost! Pray that Dillon might start being a "missionary/preacher" at this young age and reaching people for Christ in his "mission field" that may not have come in any other way! What a blessing it will be if one day in Heaven God is able to show us several people who are there because of what He allowed Dillon to go through. If this is the case - I think I can honestly sing "It will be worth it all!"

Picture Post

Pictures!!

Dillon sitting on our sofa with lots of protection so he can't take another "trip!"

This was the first (and only) time we saw Dillon tracking am object

Isn't he cute?

We just love seeing him stretch, this is the cute little face he makes

I love watching him do this! Sometimes when he is sleeping I reaching his arms over his head just so I can see him stretch! :-)

Poor Bambi!!

Last night on my way home from BI class, I hit a deer on the highway. This is the first time I have ever hit an animal. I was in the left lane and she was all the way next to the cement barrier. I tried to slow down and she tried to run back across, but unfortunately she ran right into my van. I thought I killed her for sure. I got home and went to open my door to get out and could barely squeeze out it, apparently the broken fender is pushed back into the door so it won't open right. The hood is bent up a little and the headlight and side are messed up. Dillon, JayDonn, and I are fine though. Josiah and I went back to see if we could find the deer, but she was no where to be found. She must have gone deep enough in the woods that Josiah couldn't see her. I am sure she died as I know I hit her head right in the middle if the van. Praise the Lord she rolled down the side instead of coming over the windshield. On our way home, Si had to hit his brakes hard as there were three more and one was starting to walk down onto the highway. I am waiting today to hear from the insurance people so it can be taken into a body shop.

That was an adrenaline rush I could have done without!!

Dillon and JayDonn Updates

Dillon:
Dillon is still having whatever problem he is dealing with. I have called the doctor, but of course he called back during the short time I stepped out to go to the Chiropractor. I will speak with him tomorrow. I had a weight check done at the doctors office this afternoon and Dillon is back down to 10lb 2oz. I had them weigh him on both scales so I am sure it is right, but not sure of why he lost 14 oz in 15 days. This is another I will tell the Neurologist when I talk to him tomorrow to see if we should start talking about changing seizure drugs or not. Thank you for all those who prayed - this defiantly isn't over so please keep praying for God to give Josiah and the doctors wisdom. I fell like pounding my head into a wall....I need God to give the wisdom to Josiah so all I have to do is what he says. They say insanity is when you keep doing the same thing expecting different results...what is it called when you do everything you can different and get the same results? I think that is insanity too!
JayDonn:
Wednesday I got a call from the doctor. My sugar came back at 160, it shouldn't have been above 135. So with the help of a lady from my parent's church (Thank you Mrs. A for all your help!) I started changing my diet and trying to be careful of the carbs I was eating. I went this morning for the 4 hour test. If my number would have been above 130 after fasting for 10 hours I would defiantly have gestational diabetes. My number came back at 80. So then I had to drink the orange sugar drink and give more blood an hour later, two hours later, and three hours later. I don't know those numbers yet. After each drawing I was getting more and more sick feeling and light headed, the lady said it is probably lack of food and that my sugar could actually be getting low. Sure enough as soon as I had some graham crackers and orange juice I felt much better. I am not sure if that means my numbers are where they should be or not. I should know in the next day or two if I do have it, but I will know for sure either way at my appointment on Thursday. Thursday they are doing another ultrasound. Since the blood work came back high at 17 weeks (when they thought he might have had spina bifida - which has been confirmed that he does not have it in case someone didn't know this already.) they have to check to make sure the placenta is working and that JayDonn is growing like he should be. I know I am getting bigger and I can feel him getting bigger and stronger so I am not worried, I am excited to get to see him again!

I'll let you know more when I know more. Thank you again for praying - I don't know if people understand how much it means to me to know that so many people all across this country and other countries are praying for my little boy, and for me! We are not going through this alone, sometimes it feels like we are, but we aren't everyone who prays for Dillon and loves Dillon is going through this to some degree with us. Thank you.

Esther 4:16 - A Call for a Fast

Esther 4:16 Go, gather together all the Jews that are present in Shushan, and fast ye for me, and neither eat nor drink three days, night or day: I also and my maidens will fast likewise; and so will I go in unto the king, which is not according to the law: and if I perish, I perish.

We started Dillon on the collic medicine yesterday. So far I am not seeing any improvement. The doctor said to give it 5-7days. I am asking everyone who reads this to pray and consider joining Josiah and I in a fast. We am praying for several things:

1. If it might be God's will that this would in deed be collic and clear up before Monday (which would be day 7)
2. If it does not go away, that God would give Josiah and I and the Doctors special wisdom in deciding what the next step should be so Dillon doesn't have to go for any unnecessary tests. I have a feeling their next step is going to be EEGs to see if it is seizures - which will probably mean being admitted into the hospital again for at least a day or two.
3. I am not praying for everything with Dillon to get better (for him to be 100% healed with no effects of the brain damage anymore) - I know that isn't God's Will for his life. However, I am praying that we might be able to figure out this one issue so Dillon will not be in what appears to be pain all the time.

Now, my Pastor has advised me that he does not think it is wise for me to fast from food since I am pregnant. I put out his advice to you: if you are pregnant, have heart problems, diabeties, liver problems, etc. then a food fast probably isn't a good idea. BUT - you can fast from something else like I am going to do. I believe I will give up the computer, right now I am thinking from Thursday until at least Monday (when the next step will need to be taken if this has not cleared up). I have a Pastor's Wife who has a special place in her heart for special needs kids and some experiencing in helping families coming from Maryland to visit with Dillon and I tomorrow so that is why I will wait until Thursday. You don't need to respond to this, if you feel God isn't leading you to fast over this that is fine, but I would just like to ask as many christians to bring this matter before God and "show" Him how serious our requests are to us. Thank you!