Friday, April 27, 2007

Praying the Scripture

Praise the Lord for the appointments on Wed.!! Prayer really works - God hears us! What a blessing to have a God that hears and answers!
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 -
"For we have not an high priest which cannot be touched with the feeling of our infirmities; but was in all points tempted like as we are, yet without sin. Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need."
I read in a book on learning how to pray that we should learn to pray the Scriptures, learn to pray the promises. This IS a promise - we will find mercy and grace to help us if we go before God's throne.
I also read Psalm 27. There were several verses that stuck out to me that I could really pray these verses to God.
Verses 7-9
"Hear, O LORD, when I cry with my voice: have mercy also upon me, and answer me. When thou saidst, Seek ye my face; my heart said unto thee, They face, LORD, will I seek. Hide not thy face far from me; put not thy servant away in anger: thou hast been my help; leave me not, neither forsake me, O God of my salvation."
Verses 13-14
"I had fainted, unless I had believed to see the goodness of the LORD in the land of the living. Wait on the LORD: be of good courage, and he shall strengthen thine heart: wait, I say, on the LORD."
God know exactly what is causing these problems in Dillon - I just need His wisdom in figuring it out so I can help Dillon.

Wednesday, April 25, 2007

*Drum Roll Please*

Dillon weighs.....*drum roll please*...... 10 pounds 11 ounces!!! He was at 10 - 4 and this time he was weighed on the same scale as last time. THANK YOU FOR PRAYING!!! Please keep praying for him.
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

Last night Josiah and I decided it was time to change Dillon's diet. Josiah picked him up some organic baby formula but after speaking with his mom, we thought we would try lactose-free instead. There are 3 people (at least) on Si's side of the family that are lactose intolerant. He got his first "normal" formula last night. He seemed to handle this well. I got up about 4:30am to check on him and there was very little stuff that he had coughed up. I suctioned Dillon anyways and got a normal amount from his nose. Then when Si got up about 7, he said Dillon still had not coughed much up at all. Once Daddy woke him though he did cough a little more. :-) Then during the day he was getting protein supplement with 5ml of fish oil. The fish oil provides the fat. However, between the fact that he did not dirty a diaper since yesterday and the change he did not handle his day feeds well at all. Around 8pm I gave him the formula instead of protein/oil combination and he did not do well with that so I do not think it is so much of what he was getting today as much as it was how much he was getting. I accidentally made the formula a little thicker last night - which is fine - other than it means he got even more fat on top of the fact that the formula has more fat than the goat milk. I think I basically fed him too much today! :-( oops. Well I guess it is better to give a 10 pound 10 month old too much than too little.
Please pray for these two things when you think of Dillon:
1. That we will figure out what is causing him to have pains/gas in his stomach so we can help it to go away
2. That he will gain weight! He supposed to see the doctor on Wed - please really lift him up before the Lord and ask that Dillon might gain even a few ounces before then. (If he hasn't gained any on my home scale I may have to cancel his appointment and reschedule the appointment. I am not sure if I will do that or not yet though.)
Thank you for your continued prayers for him - you don't know how much it means to me and how much it encourages me to know people are always praying for him. There are times when I feel too discouraged because I am not sure what God's will is to really pray for Dillon - but I know that there is always at least one person who has prayed for him each day.
THANK YOU!

Thursday, April 19, 2007

One of those days....

I went this morning a little after 9 to a check up for JayDonn. I knew they wanted to do blood work to test for sugar so I told them (since they are always SOOO behind) as soon as I got there that I had to be done by 11 since I had someplace else to be. I told them they needed to get me going for the blood work right away. They waited until I was done my whole appointment to then want to start the blood work which would then require me to drink something and wait an hour! What is wrong with these people? Why not give me the drink while I wait to be seen then let me go right down and give blood.
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

Some more poems I have found on the internet:

My Anticipated Son
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.
This one is written to a little girl - but I think you can easily change it to a little boy in your mind as you read it and see it as Dillon....
To Alexandra On Mother's Day, 1996
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.
Some Mothers Get Babies With Something More
My friend is expecting her first child. People keep asking what she wants.She smiles demurely, shakes her head and gives the answer mothers have giventhroughout the pages of time. She says it doesn't matter whether it's a boyor a girl. She just wants it to have ten fingers and ten toes.Of course, that's what she says. That's what mothers have always said.Mothers lie.Truth be told, every mother wants a whole lot more. Every mother wants aperfectly healthy baby with a round head, rosebud lips, button nose,beautiful eyes and satin skin. Every mother wants a baby so gorgeous thatpeople will pity the Gerber baby for being flat-out ugly.Every mother wants a baby that will roll over, sit up and take those firststeps right on schedule (according to the baby development chart on page 57,column two). Every mother wants a baby that can see, hear, run, jump andfire neurons by the billions. She wants a kid that can smack the ball out ofthe park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want.Some mothers get babies with something more.Some mothers get babies with conditions they can't pronounce, a spine thatdidn't fuse, a missing chromosome or a palette that didn't close. Most ofthose mothers can remember the time, the place, the shoes they were wearingand the color of the walls in the small, suffocating room where the doctoruttered the words that took their breath away. It felt like recess in thefourth grade when you didn't see the kick ball coming and it knocked thewind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, evenyears later, take him in for a routine visit, or schedule her for a wellcheck, and crash head first into a brick wall as they bear the brunt ofdevastating news. It can't be possible! That doesn't run in our family. Canthis really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finelysculpted bodies. It's not a lust thing; it's a wondrous thing. The athletesappear as specimens without flaw - rippling muscles with nary an ounce offlab or fat, virtual powerhouses of strength with lungs and limbs working inperfect harmony. Then the athlete walks over to a tote bag, rustles throughthe contents and pulls out an inhaler.As I've told my own kids, be it on the way to physical therapy after a thirdknee surgery, or on a trip home from an echo cardiogram, there's no suchthing as a perfect body. Every body will bear something at some time oranother. Maybe the affliction will be apparent to curious eyes, or maybe itwill be unseen, quietly treated with trips to the doctor, medication orsurgery. The health problems our children have experienced have been minimaland manageable, so I watch with keen interest and great admiration themothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and outof a wheelchair 20 times a day. How you monitor tests, track medications,regulate diet and serve as the gatekeeper to a hundred specialists yammeringin your ear.I wonder how you endure the clich├ęs and the platitudes, well-intentionedsouls explaining how God is at work when you've occasionally questioned ifGod is on strike. I even wonder how you endure schmaltzy pieces like thisone -- saluting you, painting you as hero and saint, when you know you'reordinary. You snap, you bark, you bite. You didn't volunteer for this, youdidn't jump up and down in the motherhood line yelling, "Choose me, God.Choose me! I've got what it takes." You're a woman who doesn't have time tostep back and put things in perspective, so, please, let me do it for you.From where I sit, you're way ahead of the pack. You've developed thestrength of a draft horse while holding onto the delicacy of a daffodil. Youhave a heart that melts like chocolate in a glove box in July, carefullycounter-balanced against the stubbornness of an Ozark mule. You can be warmand tender one minute, and when circumstances require, intense andaggressive the next. You are the mother, advocate and protector of a childwith a disability. You're a neighbor, a friend, a stranger I pass at themall. You're the woman I sit next to at church, my cousin and mysister-in-law. You're a woman who wanted ten fingers and ten toes, and gotsomething more. You're a wonder.

Monday, April 09, 2007

If its not one thing....

its another. Dillon decided to cough a whole last out last night and I didn't hear him. So this morning when I went into his room he had all the junk all in his right eye (who know how long it was there maybe for hours - I don't know).
{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!

I was just visiting Jewels of Joy (Liz's blog) and found this link for a video to watch. It was very good but I will warn you to have tissues around. I think I used about 15!

My First Boo-Boo

I got my first Boo-boo tonight. Mommy had me sitting on the sofa like I normally do and she went into the kitchen to make dinner. She heard me coughing and came to check on me but didn't see me sitting on the sofa. She is very confused at how I did it - but somehow I sumersalted off of the sofa when I coughed and landed on the floor - good thing Daddy got nice thick carpet put in! Mommy thinks I threw my head forward to hard that I just kept going. See - I am a strong boy! I just have to learn HOW to use my strength. I have a small mark under my left eye lid and it is a little purple but I'm okay. Mommy gave me some medicine to make it feel better and put a cold cloth on it. I am going to have a nice colored eye tomorrow for my first Easter though.

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?

HAHA! I love it. People keep asking me if we are "all settled"? Yeah right! My answer is - we are "IN" but not "SETTLED" that is going to take a long while!
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