Tuesday, May 08, 2007
Poor Bambi!!
Monday, May 07, 2007
Dillon and JayDonn Updates
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.
Tuesday, May 01, 2007
Esther 4:16 - A Call for a Fast
- If it might be God's will that this would in deed be collic and clear up before Monday (which would be day 7)
- 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.
- 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!
Friday, April 27, 2007
Praying the Scripture
I want to thank you all again for praying for Dillon and once again ask you to continue to pray for him - and me. It is starting to drain me...watching my little boy be in some sort of severe pain and not knowing what to do to help him (it had been a week and a half). Today thru Sunday I am going to try giving him Fennel Tea. A lady in my church suggested this before when I thought he had gas and within a day or two he stopped throwing himself around. What he is doing now is different from that, but the symptoms seem to be the same so I am going to give this a try again. PLEASE pray this works! I don't know what is wrong and what to do to help if this doesn't work. The increase of seizure medicine hasn't helped so I do not think these are seizures.
This morning I read in Hebrews and Psalms. Hebrews 4:15-16 -
I also read Psalm 27. There were several verses that stuck out to me that I could really pray these verses to God.
Wednesday, April 25, 2007
*Drum Roll Please*
Also - the audiologist was able to turn down both of Dillon's hearing aides today. This is probably NOT due to any improvement with the nerves but due to the fact that he seems to be out growing some of the congestion. His right ear didn't change that much but there seems to be a big improvement in his left ear. He is even getting into the conversation level a little. This means that if we talk really loud near his left ear he will probably hear it as a whisper. His ear drum is still not working at all though. This is either due to fluid behind the ear drum or due to structural problem. If it is structural then it happened in the first trimester, but this is unlikely. It is most likely fluid, but we have to see an ENT before we will know for sure. IF it is fluid as he gets older and bigger they can do some things to remove it and that should improve his hearing even more!
Maybe these two things were the improvements I (well - we - as I know you all pray too!) have been praying so hard for.
Friday, April 20, 2007
New Diet
Thursday, April 19, 2007
One of those days....
So I couldn't stay becuase of my prior commitment - which turned out not to have gone like it was supposed to either. I was able to fellowship for a few minutes and spend a lot of money on lunch :-( but wasn't able to be helpful to my friend like I was planning. So I could have stayed for the blood work. I have to go now next week for the blood work on the only day I will be back in the area - but that day already has a two hour appointment for Dillon's hearing test and a normal check up with his doctor and church in the evening.
Then to top it all off I took a paper to the doctor for them to sign so Dillon's therapist are allowed to start working with him so I asked to have him weighed while I was there. 10 days ago I was told by them that he weighed 11.5 lbs - I was thrilled he was gaining weight! Today they tell me he is 10lb 4 oz. (His chart had 11lb 4 oz written) so they were saying he lost a WHOLE POUND in 10 days??? I don't think so. Their scale must have been off last time. This means Dillon has not gained ANY weight since Jan!
PLUS since Monday he has been having these weird twitches that the therapist and Josiah think are seizures so the nuerologist upped his medicine (you know - the one that I think is the cause to why he can't gain weight...) last night. I don't think they are seizures becuase his stomach is making noises almost everytime when he is having the twitches. So I think something is going on with his stomach - but what? That is the millon dollar question! If you can answer it I will give you a millon dollars! (Okay so I don't have that but I sure would hug you and be thrilled!!)
I think I am going to take Dillon upstairs and take a nap with him - maybe when I wake up this day will start going right. :-)
Thursday, April 12, 2007
Poems
I anticipated complaining of a waking baby;
Not of being grateful he's able to wake at all.
I anticipated the wonder of time rushing past,
Not of reflecting on milestones so small.
I anticipated crying at immunizations and bumps while learning his way;
Not of agonizing at more tests, evaluations, and word of more delays.
I anticipated choices over preschool, clothes, and scout troops;
Not of choices between hospitals, specialists, and which support groups.
I anticipated loving him, but enjoying his independence from me soon;
Not of loving him so much I'd want to keep him sheltered in my cocoon.
I anticipated health and perfection when my baby was inside, thinking anything less would be tragic;
But now that he is here, my special son had worked some kind of magic.
I anticipated anger and disappointment at this fate;
Not the joy and growth and knowledge that have become mine as of late.
I anticipated something different, that is certainly true;
But that's because I never could have anticipated one I love as much as you.
My sweet Angel, What a precious gift God has given to me in you. At first, there were so many things I did not understand . . .
Why would God give me a child who was not perfect . . .
I did not understand that it was I who could not see. I grieved for all you would never do . . .
For the first steps you will never take, For the tricycle you will never ride,
For the roller skates you will never own,
For the first date you will never have,
For the prom you will never go to,
For the joy that you will never know of having your own child.
I grieved for myself . . .
For never being able to hear you say " I love you, Mommy"
For never being able to teach you all the things I wanted to share with you,
For never being able to see you in a lovely wedding gown,
For the grandchildren I'll never have.
The pain of losing those things will never, ever go away.
But now I know . . . now I understand . . . You are a very special gift.
What you have to give transcends all those things I have grieved.
How can I possibly tell you how very much you have taught me?
I am amazed that I could learn so much from a child. . . .
A child whom others think has so little to give this world . . .
And cannot speak, but you say so much . . .
You infinite patience without complaining,
You're pure and simple innocence,
Your tolerance of so much that others could not bear,
Your sheer delight in even the simplest things,
Your quick, beautiful smile even when all is not well with you.
You have shown me things in myself that I never knew were there. You have taught me so much about life.
Now I know . . . now I understand . . .
It is you who gives me strength,
It is you who has so much to give and so much to teach me.
God has blessed me with a very special gift . . . the gift of Alexandra. I love you.
Monday, April 09, 2007
If its not one thing....
{The left eye is the one with the little mark under it from his little "trip" he decided to take. So one eye is black and blue and the other is red and swollen}.
It was red and puffy so I cleaned it off with a wash cloth and put eye drops in like I normally do when I have seen it before (never this much though). But a few hours later it was still swollen shut and red and he was making so many cry faces I called the doctor. They saw him this afternoon and said it looks infected. They took a culture to see what it is exactly but gave me drops for his eyes and said if it isn't better in 5 days to get him in again. I am treating it as though it is contagious - I didn't ask if it was but since they don't know what it is they will tell me to treat it as though it is and if it isn't great. So I will be missing class tonight and taking care of my poor little boy who seems to like excitement these last few days.
The "Same Lake, Different Boat" book talks about how every family has relentlessness but it is worse when you have special needs - boy does that seem true lately! If it isn't one thing - its another! :-)
Saturday, April 07, 2007
Tissues Needed - LOTS of tissues!
My First Boo-Boo
Have a good Easter everyone. (One thing Mommy has been thinking about with Easter is - there isn't anything she wouldn't do to heal me if she could. I am sure many of you feel the same way. NONE of you would have willing let this happen to me, I'm sure. Yet God willing let His Son suffer so much and die for us. Makes you think - doesn't it?)
Love,
Dillon
Tuesday, April 03, 2007
All Settled?
It is nice in our new home. Josiah and I enjoy having a bedroom instead of a basement. It has doors on the closets so we don't have to look at my clothes, it has a nice white ceiling instead of pipes, it has two windows instead of feeling like a dungeon, it has nice think carpet instead of that thin stuff over cement. We were very thankful for the apartment God provided us with, it really was quite big considering the amount we had to pay for rent in that area, but having a house really is nice. I can't wait to get it all unpacked so we can start inviting people over. So far - only Becky has seen it (out of my friends that is). And that is because she helped us on moving day! My goal is to be done - really done - by the time JayDonn comes. While that may seem like a long time to some it really isn't considering how much you have to unpack and organize plus doing things like hanging blinds and doing some other work around the house it takes a long time. And then you add Dillon into the mix and how am I supposed to get things done when he wants to cuddle?! :-)
Whenever I get this house in order I will post pictures - but not a moment before that! So if you want to see if before that time comes - you will just have to invite yourself over. :-D
Thursday, March 29, 2007
New Title
The new title of my blog is going to be "He Maketh No Mistakes" (For those of you who get this by email - you need to come to the site to see the new picture. dillonsmommy.blogspot.com)
Why the Platypus you may ask? Well, I was trying to think of something in creation that is commonly thought of as a "mistake". If you know anything about the platypus scientists say it is a weird creature that is designed very oldly.
This is taken from http://en.wikipedia.org/wiki/Platypus : The Platypus (Ornithorhynchus anatinus) is a semi-aquatic mammal endemic to eastern Australia and Tasmania. Together with the four species of echidna, it is one of the five species of monotremes, the only mammals that lay eggs instead of giving birth to live young. It is the sole living representative of its family (Ornithorhynchidae) and genus (Ornithorhynchus), though a number of related species have been found in the fossil record.
The bizarre appearance of this egg-laying, duck-billed mammal baffled naturalists when it was first discovered, with some considering it an elaborate fraud. It is one of the few venomous mammals; the male Platypus has a spur on the hind foot which delivers a poison capable of causing severe pain to humans.
So I thought of it. God didn't make a mistake when He created the platypus and neither did He make a mistake when He created Dillon. It was not a mistake that Dillon was born to Josiah and I, it was not a mistake that he has brain damge, it was not a mistake that he has so many long term effects from the birth injury. And it isn't a mistake that God is giving us another little boy so soon. Maybe God is going to use JayDonn to help Dillon heal, maybe He is just going to use JayDonn to help heal my heart. I don't know - I just know that HE MAKETH NO MISTAKES!
Wednesday, March 28, 2007
This and that
Also on friday night - I accidently pulled Dillon's G-tube out. It clearly hurt him but he only seemed to be in pain for a few seconds. There were a couple drops of blood but Daddy and Grandpa S put it back in for him. Then I took him downstairs and had him laying on me - I felt so bad! Then, even though all day he hadn't moved at all - he picked his head up and scooted up so his head rested on mine. I think he was telling me "I'm okay Momma, don't feel bad!" How sweet it was!
In Church Sunday night Daddy was holding him and he held his own head up for several minutes. And yesterday and today he has been doing just wonderful with moving his whole body more and holding his head up. He even kept it up for the therapist this morning from the position of laying flat on his tummy. This is the hardest position since it has the most gravity to fight - Praise the Lord - he really is making progress with his head! Keep praying!! ( I am starting to call him Mr. Wiggles since he has been moving so much it is almost hard to hold him!)
Our new neighbors are Muslim and they have a 3 year old daughter who is very similar to Dillon. Seizures, poor muscle tone, has a G-tube (she can swallow now though), has a Trac (sp? the thing in the neck to help you breath...only at night does she need it now though), just started to walk at 3 yrs old, never cries, has some vision problems, didn't suck for a long time, didn't hold her head for a long time, needs suctioned, gets all the therapies, etc. I didn't get to meet the girl yet, just the mom and the 5 year old girl. Please pray though - Josiah has had a burden to tell the Muslim people about God but neither of us felt God leading us to go to a mission field - at least not right now. Isn't it neat though that we are following God's leading and He has this all planned out already! So please pray we will be able to talk with these people as we already seem to have a lot in common with them. Another interesting things is the mom (Diva is her name) talked about God - not Allah. I am not sure why.... The neighbors on the other side are very nice people. Josiah talked with him for 2 hours last night. I am excited to see what God has in store for us in Pottstown.
I was very disappointed that no one gave me any suggestions for a new blog title. :-( So - I think I decided on one. You'll have to wait till I can get it changed though to know what it is. And since we are moving that may be a week or so. :-)
Thursday, March 22, 2007
Poems
~Author Unknown~
I am the child who cannot talk.You often pity me, I see it in your eyes.You wonder how much I am aware of -- I see that as well.I am aware of much, whether you are happy or sad or fearful,patient or impatient, full of love and desire,or if you are just doing your duty by me.I marvel at your frustration, knowing mine to be far greater,for I cannot express myself or my needs as you do.You cannot conceive my isolation, so complete it is at times.I do not gift you with clever conversation, cute remarks to be laughed over and repeated.I do not give you answers to your everyday questions,responses over my well-being, sharing my needs,or comments about the world about me.I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself;I do not give you understanding as you know it.What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine;the depth of your love, your commitment, your patience, your abilities;the opportunity to explore your spirit more deeply than you imagined possible.I drive you further than you would ever go on your own, working harder,seeking answers to your many questions with no answers.I am the child who cannot talk.I am the child who cannot walk.The world seems to pass me by.You see the longing in my eyes to get out of this chair, to run and play like other children.There is much you take for granted.I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.I am dependent on you in these ways.My gift to you is to make you more aware of your great fortune,your healthy back and legs, your ability to do for yourself.Sometimes people appear not to notice me; I always notice them.I feel not so much envy as desire, desire to stand upright,to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.I am the child who is mentally impaired.I don't learn easily, if you judge me by the world's measuring stick,what I do know is infinite joy in simple things.I am not burdened as you are with the strife's and conflicts of a more complicated life.My gift to you is to grant you the freedom to enjoy things as a child,to teach you how much your arms around me mean, to give you love.I give you the gift of simplicity.I am the child who is mentally impaired.I am the disabled child.I am your teacher. If you allow me,I will teach you what is really important in life.I will give you and teach you unconditional love.I gift you with my innocent trust, my dependency upon you.I teach you about how precious this life is and about not taking things for granted.I teach you about forgetting your own needs and desires and dreams.I teach you giving.Most of all I teach you hope and faith.I am the disabled child.
And just in case you don't know Welcome to Holland, this is that one:
Wednesday, March 14, 2007
Same Lake Different Boat
First - The author points out that there are three views to disability. Which one do you have? Has that changed at all after knowing someone (actually being close to someone rather than just seeing people at a distance) with a disability? Now be honest with yourself! I defantly held the first view. I felt bad and sorry that it happened I felt as though they have "problems" I still am working at countering this view with the Biblical view.
- The Historical View: Disability is an Abnormal part of Life in a Normal Wworld. This is the view that something is "wrong" with the person or that they have a "problem". It is the view that in history, and even in our liberated world today, causes people with disabilities to be shunned and avoided and mourned over.
- The Post Modern View: Disability is a Normal part of life in a Normal world. This is the view held by those who are afraid of offending. They want to encourage "celebrating" disability. When I read this the first thoughts that came into my mind is that they are ignorant and that they are offensive. I have YET to have anyone come to me and say they are jealous that Dillon was born to me instead of them because they so desired a child with disabilities. No one ever goes out seeking a disability for themselves. It is ludicrous and absurd that anyone would want to celebrate disability.
- The Biblical View: Disability is a Normal part of life in an Abnormal world. Did you get that? Only the Biblical view sees our world as the "abnormal". Our world is stricken by the fall - there are consequences of the sin. Everyone suffers from physical and spiritual difficulties because of the fall. A person with a disability is just has the physical/mental consequences more evident in their life. They often have a much better spiritual understand because of this, though. They are not to be shunned but don't try to celebrate it either. When I read this I thought of celebrating cancer or soldiers dying in a war. Those are not to be celebrated - they are to be understood as normal life in our abnormal world.
These thoughts really hit home to me. Do I look at Dillon as though he should be shunned? Not really - but I think I honestly feel as though he WILL be in his life. Most people in our world don't have the Biblical view on this (especially not when most Christian don't - myself included). They don't see every individual as an expression of God's glory. I know I don't always look at a person and say "Wow, God created that person - how wonderful!"
The next thought that really hit me was about relentlessness. Now every family will experience this, but for the families of a disabled person it come so much more often. Simple every day tasks are so relentless that I won't even get into that right now since this post will be long enough but I think you can imagine. But what about our response to the relentlessness? She used Joseph's life as an example in this. There are three reactions possible:
- The Victim Mentality - the world owes me, I can't believe this is happening to me, etc. If Joseph would have had this he would have cursed God, gotten depressed, and died with a meaningless life.
- The "I will beat this" Attitude - This is where you view disability as cancer - something that can be beat. You believe you will overcome it not matter what it takes to do that. If Joseph would have had this he would have given in to temptation and then broke out of jail with the help of the baker and cup bearer gone and killed Pharaoh and then killed his brothers.
- Engage Reality with a God-Reliant Perspective - This sis where you accept whatever life gives you because you are God-focused not difficulty-focused. This is the only view that keeps God as the center of your life. The other two allow you to make your whole life about the problems. It is putting your circumstance on the throne in your heart instead of God. He allowed these things to happen, surely we can look to Him while going thru it all.
Okay that's enough for now - but there will be more coming so look for the posts titled "Same lake Different Boat" (By the way that means that people without disabilities are not in a different lake as though with it - nor are they in the same boat...they are in the same lake but a different boat. As a church we are even closer - we are the same body different parts....see the parallel?)
Friday, March 09, 2007
Ideas Needed
Okay - so please submit any and all ideas under Anonymous - that way if I pick one I won't feel bad for not picking someone else's. :-)
Wednesday, March 07, 2007
Must be a "Mommy Thing"!
Tuesday, March 06, 2007

These are words generated by the internet that are used a lot in my blog. Thanks for the Word Cloud Abbi! To create your own (you can edit which words it selects go to http://www.snapshirts.com/ and click Custom. It is quick and easy to use.
Doctor Update
In the meantime- I am still trying different homeopathic things to help with his tummy aches. I am seeing some progress, but not as much as I would like. It is a trial and error kind of thing since he can't explain his symptoms to me. Please pray for wisdom that we might be able to find one to help him feel better.