We had our pre-op for hip surgery today. The doctor normally likes to read the X-ray while the family is still in the anesthesia appointment, but he wasn't able to be in today so he will call me Monday with how the X-ray compares to the last one. The pre-op appointment went like they all do... nothing too exciting. They will reserve him a bed on the PICU for after the surgery. I have to call his neuro tomorrow and figure out how we will adjust the diet because he is not allowed his fish oil for 2 weeks before surgery. I believe fish oil thins the blood so he can't have it, but without it his diet loses a lot of fat and will cause more seizures.
However, I think we will still end up putting off the surgery until after the baby is born so that the stretches we are doing, the chiropractor and the acupuncturist can have a few months to see if they can help his body without surgery. Especially since this is a surgery the doctor told me will have to be done multiple times. The doctor had told me there was no rush in getting it done, so if there is a hope to help him without surgery/casting Josiah and I feel we must give it a chance! (If we dely the surgery I do not have to have this appointment again, they will just call me to go over any changes - so by going now even though we will probably put it off for a few months I did not waste anyone's time.)
Dillon's leg has made improvements from what i can see. He now allows us to stretch him as much as we can without his heart rate going up, him fighting us, or meeting resistance. He allows us to put him into a froggy position on his belly and he will keep it for up to an hour. And his nurse said last night he had his left knee bent and the ankle on top of the right leg. All these are improvements from a few weeks ago!!! So I am really praying that these improvements mean the hip is moving back into place! PLEASE continue to pray that this will be the case! Dillon and I thank you for your prayers! :o)
Thursday, March 11, 2010
Sunday, February 21, 2010
Funny Jay Quotes
My mom told me I haven't been telling her Jay's funny quotes, so I thought I would write them down so I have them for him to read one day too...
1. This morning while getting ready for church I had my hot rollers on my bed. Jay was sitting on my bed watching me and informs me "Those are for Grandmas!" I guess it has been a while since I used them to curl my hair so he only remembers seeing his Grandma use them!
2. Thursday night Jay felt the baby kick him for the first time. I have tried before but he is too impatient. His eyes got very big when he really did feel the baby. Then Friday at the doctor's office he felt it again. He has tried a few more times and he usually puts his hand on my belly for a second and then says "He kicked me!" and I will tell him no he didn't, but Jay insists he did kick Jay. I don't think he gets that I can feel when it happens too! Jay is calling the baby "he" or "boy" sometimes now. I kept telling him that baby might be a girl or it might be a boy, and I think he is finally understanding that we don't know what it is. (Well MOST of us don't know what it is!) But the funny quote that goes with this one is something he has been saying for weeks now... He will just walk up to me and tell me this.... I don't know why! "I don't break the baby's head, I kiss the baby?" And I say yes kiss the baby so he does. I don't know WHERE he got the "I don't break the baby's head" from though! But I am glad he knows he shouldn't do that!
3. Often when he is sitting on the potty he says "I don't pee on Mommy! I don't poop on Mommy! I pee in the potty." Another one I am glad he knows! But not sure why we have to talk about it.... boys!
4. If I have something hot in my hand he tells me "Don't burn Jay's head!" Like I would burn his head!
5. Daddy was in the bathroom with him cutting his hair and I went up to see how it was going. Jay told me "Ummm, you go out and Daddy cut my hair!" Thanks a lot little man... you do realize I am the one who makes your food right? heehee
6. When he is on the potty now he tells us to go out so he can poop. He is only 2.5 years old!
7. Jay loves to "wipe my kisses off" as a game. Sometimes he will even wipe my kisses off of Dillon and Daddy too! I thought I would have at least a few more years before he wiped my kisses off!
Can't think of any more right now... hope you smiled as you read these. And I can't wait to one day tease Jay about all the crazy things he said.
1. This morning while getting ready for church I had my hot rollers on my bed. Jay was sitting on my bed watching me and informs me "Those are for Grandmas!" I guess it has been a while since I used them to curl my hair so he only remembers seeing his Grandma use them!
2. Thursday night Jay felt the baby kick him for the first time. I have tried before but he is too impatient. His eyes got very big when he really did feel the baby. Then Friday at the doctor's office he felt it again. He has tried a few more times and he usually puts his hand on my belly for a second and then says "He kicked me!" and I will tell him no he didn't, but Jay insists he did kick Jay. I don't think he gets that I can feel when it happens too! Jay is calling the baby "he" or "boy" sometimes now. I kept telling him that baby might be a girl or it might be a boy, and I think he is finally understanding that we don't know what it is. (Well MOST of us don't know what it is!) But the funny quote that goes with this one is something he has been saying for weeks now... He will just walk up to me and tell me this.... I don't know why! "I don't break the baby's head, I kiss the baby?" And I say yes kiss the baby so he does. I don't know WHERE he got the "I don't break the baby's head" from though! But I am glad he knows he shouldn't do that!
3. Often when he is sitting on the potty he says "I don't pee on Mommy! I don't poop on Mommy! I pee in the potty." Another one I am glad he knows! But not sure why we have to talk about it.... boys!
4. If I have something hot in my hand he tells me "Don't burn Jay's head!" Like I would burn his head!
5. Daddy was in the bathroom with him cutting his hair and I went up to see how it was going. Jay told me "Ummm, you go out and Daddy cut my hair!" Thanks a lot little man... you do realize I am the one who makes your food right? heehee
6. When he is on the potty now he tells us to go out so he can poop. He is only 2.5 years old!
7. Jay loves to "wipe my kisses off" as a game. Sometimes he will even wipe my kisses off of Dillon and Daddy too! I thought I would have at least a few more years before he wiped my kisses off!
Can't think of any more right now... hope you smiled as you read these. And I can't wait to one day tease Jay about all the crazy things he said.
Friday, February 19, 2010
Surprises!
We had several appointments today. Dillon's doctor said his lungs sound GREAT! So that is awesome. He said Dillon shouldn't even look at anyone sick still though. We also had acupuncture today, went shopping, and went out to lunch.
Another appointment today was my OB appointment. They said my blood sugar levels came back perfectly normal - Praise the Lord! With JayDonn I was borderline diabetic so I was worried this time. But when I tested myself I was actually low. So I am very thankful the numbers were good. My iron levels came back so good the doctor told me they are better than her levels! More awesome news. My blood pressure is good. With Dillon I gained 19 pounds, with JayDonn I gained 25 pounds, and with this one I have already gained 24! But my pre-pregnancy weight was much lower this time than with the other two.
I told the doctor that when I have the next ultrasound I would like to do something. She told me I wouldn't have another ultrasound unless necessary. I told her I was hoping to find out the gender and have them write it down in an envelope so I could give it to Josiah. So she let us wait and quick did an ultrasound. The baby was SO active though. Even the doctor said we have a very very wiggly baby. The baby wouldn't go into a good position for more than a second or two but she wrote down what she is 80% sure the baby is. And no, Robin and I did NOT look!
When Josiah got home I gave him the envelope and told him what I did. (He had no idea I wanted to do this for him) He took the envelope upstairs and came back saying it had scribbles on it not words. I guessed they must have done the symbol for male or female so I showed him the symbols and he said it was still messy and hard to understand - but he does know what the doctor wrote! This is so much fun! I love that he knows, but I don't and no one else does!
And no - he is NOT going to tell! :o)
I love surprises, don't you?!
Another appointment today was my OB appointment. They said my blood sugar levels came back perfectly normal - Praise the Lord! With JayDonn I was borderline diabetic so I was worried this time. But when I tested myself I was actually low. So I am very thankful the numbers were good. My iron levels came back so good the doctor told me they are better than her levels! More awesome news. My blood pressure is good. With Dillon I gained 19 pounds, with JayDonn I gained 25 pounds, and with this one I have already gained 24! But my pre-pregnancy weight was much lower this time than with the other two.
I told the doctor that when I have the next ultrasound I would like to do something. She told me I wouldn't have another ultrasound unless necessary. I told her I was hoping to find out the gender and have them write it down in an envelope so I could give it to Josiah. So she let us wait and quick did an ultrasound. The baby was SO active though. Even the doctor said we have a very very wiggly baby. The baby wouldn't go into a good position for more than a second or two but she wrote down what she is 80% sure the baby is. And no, Robin and I did NOT look!
When Josiah got home I gave him the envelope and told him what I did. (He had no idea I wanted to do this for him) He took the envelope upstairs and came back saying it had scribbles on it not words. I guessed they must have done the symbol for male or female so I showed him the symbols and he said it was still messy and hard to understand - but he does know what the doctor wrote! This is so much fun! I love that he knows, but I don't and no one else does!
And no - he is NOT going to tell! :o)
I love surprises, don't you?!
Thursday, February 18, 2010
Hip Spica Casts
I wanted to show everyone what the cast is like that Dillon will have to be in for four weeks - if God doesn't heal his hip before surgery. These are the hip spica casts, we don't know for sure yet if Dillon's will be the bilateral or the one and one-half spica:
I also included some pictures of other kids wearing the hip spica cast that I found on the Internet. Dillon was scheduled for another X-ray at his pre-op appointment on March 11 that I didn't know about until this week. Which means, if God heals the hip before then, they will clearly see if on the X-ray..... so after seeing these pictures.... will you PLEASE PRAY FOR A MIRACLE! That Dillon's hip would be back in place by the March 11 X-ray! Thank you!
I also included some pictures of other kids wearing the hip spica cast that I found on the Internet. Dillon was scheduled for another X-ray at his pre-op appointment on March 11 that I didn't know about until this week. Which means, if God heals the hip before then, they will clearly see if on the X-ray..... so after seeing these pictures.... will you PLEASE PRAY FOR A MIRACLE! That Dillon's hip would be back in place by the March 11 X-ray! Thank you!
I know God can heal his hip, I just don't know if it is God's plan to heal it or not. Maybe there is some reason we have to go through with the surgery and cast.... but I am still praying that if there be any way within His will that He will heal Dillon's hip so he won't have to go through that.
Thank you for your prayers and for passing on this prayer request to others so that we all can go before God on Dillon's behalf.
Saturday, February 13, 2010
25 Weeks Baby #3
I am 25 weeks 1 day with our sweet Baby Kuenzi #3!
Hahaha this one makes me look HUGE!I love you Baby!
I can't wait to meet this sweet Baby - well yes I can - at least for 12 more weeks or so...
He/She is getting stronger everyday! I can no feel the little heels and fists as he/she kicks me!
Mommy and Baby!
I am 25 weeks 1 day with Sweet Baby Kuenzi #3!
JayDonn's Bible verse
JayDonn and Dillon were given this lion to color and glue onto the paper so I added a Bible verse about a lion and within 3 days Jay had it memorized. 1 Peter 5:8
Click here to see the video of JayDonn saying his Bible verse!!
Good job Jay!
Click here to see the video of JayDonn saying his Bible verse!!
Good job Jay!
Pics of Blizzard!
Blizzard of 2010!
Click here to see the video of Josiah snow blowing in this blizzard!
Philly broke it's all time record for snow fall in one year!
Click here to see the video of Josiah snow blowing in this blizzard!Philly broke it's all time record for snow fall in one year!
Sunday, February 07, 2010
Rejoice in the Lord
Tonight in church we sang this song, and it was something I needed to hear.
Rejoice in the Lord by Ron Hamilton
God never moves without purpose or plan
When trying His servent and molding a man.
Give thanks to the LORD though your testing seems long;
In darkness He giveth a song.
I could not see through the shadow ahead;
So I looked at the cross of my Savior instead.
I bowed to the will of the Master that day;
Then peace came and tears fled away.
Now I can see testing comes from above;
God strengthens His children and purges in love.
My Father knows best, and I trust in His care;
Through purging more fruit I will bear.
O Rejoice in the LORD
He makes no mistakes,
He knoweth the end of each path that I take,
For when I am tried
And purified,
I shall come forth as gold.
Rejoice in the Lord by Ron Hamilton
God never moves without purpose or plan
When trying His servent and molding a man.
Give thanks to the LORD though your testing seems long;
In darkness He giveth a song.
I could not see through the shadow ahead;
So I looked at the cross of my Savior instead.
I bowed to the will of the Master that day;
Then peace came and tears fled away.
Now I can see testing comes from above;
God strengthens His children and purges in love.
My Father knows best, and I trust in His care;
Through purging more fruit I will bear.
O Rejoice in the LORD
He makes no mistakes,
He knoweth the end of each path that I take,
For when I am tried
And purified,
I shall come forth as gold.
Friday, February 05, 2010
Follow the Yellow Brick Road...
This post was started on Friday Feb 5, but it took several days to finish it so I am just posting it now on Friday Feb 12.:
Dillon's doctor said that Dillon is "On the yellow brick road, but a long way from the Emerald City. He is just stopping to pick up the scare crow." (Gotta love Doctor Gelman!)
Translation: He is doing better but he is still not healthy. His lungs still don't sound too good from the RSV and pneumonia he had. Doctor Gelman wants us to keep both boys home from church this weekend as he is afraid of one of them coming in contact with someone who is sick. Dillon's lungs are not strong enough to handle another sickness right now without another "hotel" (hospital) stay. Doctor Gelman wants to see Dillon again on Monday to check his lungs and see if he is ready to start using less albuterol and atrovent.
Dillon's surgery was moved to March 26 because they want him as the first surgery of the day (they cannot keep him without food for too long on this diet). However, the child that was already scheduled for the 19th also needs to be the first surgery so we will be scheduled for the 26.
Dillon's acupuncturist worked on him on Friday. She put some needles in his lower back, hips, and down his legs. She also gave him a massage and taught us how to massage his legs and lower back. She wants us to have everyone in the house do a 30 minute massage on him each day. We are going to have to try hard to get this done - everyday! I was able to massage him for almost an hour tonight on Friday and off and on all day Saturday so that is a good start. We got about 13 inches of snow so the boys and I were in all day anyways.
I feel very discouraged with it all though. I don't know if discouraged is the right word, I feel like my hands are tied, like I am fighting a losing battle. Despite all our daily work with Dillon - the patterning, the masking, the 5 therapist I have in my home every week sicne he was born, the stander, the chair, the AFO's, trying to change his positions, keeping him moving all day instead of just laying in bed, keeping him as active as possible, etc - his muscles are still so tight it dislocated his hip! Even if we are able to avoid surgery in March - the timer is ticking away till the next time it will happen. I don't know how I can avoid this for life... it is impossible! Eventually Dillon WILL have to have these surgeries, casting, and braces. I think I would have to spend more time than I have everyday just massaging his legs to try to avoid it - and will it even work? Now I understand why parents do the surgeries, what choice do we have?
The last paragraph is written from a human stand point. We have no other choice, these surgeries are inevitable... without God. However, we know the one who CAN win this battle, who CAN fix his hip problems. Question is - do I have faith? James 5:14-16 "Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much."
I want to study this passage part by part. I have heard many different explanations of this verse that try to make it so that it doesn't mean what it reads. So I want to go part by part and examine what it says.
"Is any sick among you?" James was written to the twelve tribes which are scattered abroad. It was written to Christians who were not in just one church, but to the Christians all over. If the rest of the book of James applies to us as Christians today, then so does this verse. I don't believe we can say the book of James is for us - except James 5:14-16. Dillon is not a Jew, nor is he a "Christian" (due to his age and mental understanding it is not possible for him to have placed his trust in Christ alone.) However, he is apart of our family and Josiah and I have placed our trust in Christ and are God's children. He also belongs to God as God covers the babies who are not able to understand what He did on the cross.
"let him call for the elders of the church;" The term elder could refer to the members of the Sanhedrin - except that the Bible makes it clear that it is talking about the church. The members of the Sanhedrin would not have been in the church. Therefore it has to be talking about the Pastors, deacons, teachers, etc in the church. The men who were the Shepherds of the church.
"and let them pray over him," The word pray is used 306 times in this tense. Christ commands us to pray over and over again. Why would he command us to pray? Because it works! Mark 11:24 says "Therefore I say unto you, What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them." Matthew 17:20 says " And Jesus said unto them, Because of your unbelief; for verily I say unto you, If ye have the faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you." Luke 17: 6 says " And the Lord said, If ye had faith as a grain of mustard seed, ye might say unto this sycamine tree, Be thou plucked up by the root, and be thou planted in the sea; and it should obey you." Prayer works!
"anointing him with oil in the name of the Lord:" The oil here would be probably be olive oil. Olive oil is seen throughout the Old Testament as a offering to the Lord. It used used on the alters with the sacrifices to God. Olive oil was poured on the head of the man God wanted to appoint. It seems to be a symbol of one being set apart by God to do His work. It was commanded to the Jews in Exodus to be "an holy anointing oil unto me throughout your generations." Oil is associated with worship through out the whole Old testament as well. Olive oil was used to set apart the tabernacle and the things that were in it as being holy and for God. Olive oil was used in the cleansing process for when people sinned against God. The oil was used in the lamps to keep them burning as well. In Mark the Bible talks about the disciples using oil to anoint and heal the sick.
"And the prayer of faith shall save the sick," Prayer and faith are often found together in the Bible. In the verses already used, we see that only by faith is our prayer effective. We can move mountains - if we only have faith. Faith is the core, the essence of everything. James 1:5-7 says that if a man wants wisdom he needs to ask - but he needs to ask with faith. "If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed. For let not that man think that he shall receive any thing of the Lord." If we are going to anoint a sick person with oil and pray for God to heal that person - we must have faith that God will heal. James tells us that if we waver in our faith God will not give us what we are asking for. I believe this is the main reason so many people want to excuse this passage away. They don't have the faith to believe that God will heal someone. Do I have enough faith? No I don't. I need God to help me. Mark 9:17-29 is about a father who asked the disciples to remove a demon from his son. But the disciples were unable to. So the father asks Jesus. Verses 23-24 say "Jesus said unto him, If thou canst believe, all things are possible to him that believeth. And straightway the father of the child cried out and said with tears, Lord I believe; help thou mine unbelief." I think this father is saying that he wants to believe and does believe to the best he can, but is asking Jesus to help him if he has any doubts so that he can more fully believe. Jesus then granted this father's request and cast the demon out of his child.
If you stop and think about it - do you, do I, have the faith to pray and believe that God will heal Dillon's hips? It is hard, but I believe through fasting, prayer, and asking God to help our unbelief we can have the faith to go to God and ask him to heal Dillon.
"And the Lord shall raise him up;" Whenever we see God heal a person in the Bible it is immediate. I believe if God heals the person it will be known right away so that the full glory can go to God and God alone for what He has done. He will raise the person right then. Remember the lame men that were healed, they were always told to stand up and walk - right then. If the healing didn't come right away then the healing could be attributed to any number of other things. When God performs a miracle, I believe He does it so that He gets the glory for it. Another thing I notice in this phrase is also in the last phrase... the would "shall". Webster's dictionary says the word shall is a command, used to express what is mandatory, used to express what is inevitable, etc. There is no "wiggle room" in this word. It says if you pray in faith it WILL happen. The only variable here is if we will do our part. God will fulfill His promise if we do what we are told to do.
"and if he hath committed sins, they shall be forgiven him." This is another part that is used to say that the Bible doesn't really say what it seems to say. This verse says IF he hath sinned. This verse does NOT say this is only for those who are sick because of their sin, as I have been taught by some. We learn in 1 Peter 3:7 that is husband and wife are at odds our prayers are hindered. Proverbs 28:9 tells us that if we refuse to hear the law our prayers "shall be abomination." Mark 11:26 says "And when ye stand praying, forgive, if ye have ought against any: that your Father also which is in heaven may forgive you your trespasses." Psalm 66:18 says "If I regard iniquity in my heart, the Lord will not hear me:" There are several things in the Bible that will hinder our prayers being answered. So before we can go to God in faith and ask him to heal, we must have clean hearts before God. Of course, we have all sinned, so I don't think this verse is saying it can only be done if the person is perfect. But we must each make sure that we are pure before the Lord and that if there is any known sin in our life that it is confessed and forsaken before entering into this process. The verse is telling us that if we do confess sins that may be hindering our prayers - God will forgive us so we can have pure hearts and have our prayer heard.
"Confess your faults one to another," This goes along with the verse above, Mark 11:26. Matthew 18:15 says " Moreover if they brother shall trespass against thee, go and tell him his fault between thee and him alone: if he shall hear thee, thou hast gained they brother." Matthew 5:23-24 says, "Therefore if thou bring they gift to the altar, and there rememberest that thy brother hath ought against thee; Leave there thy gift before the altar, and go thy way; first be reconciled to they brother, and then come and offer thy gift." Over and over again we are told to have nothing between us and a brother in Christ before we can worship God.
"and pray one for another," How many times do we read of Paul telling a church that he is praying for them? That his prayers don't stop, that they are always in his prayers? Many times. Paul understood the power of prayer and therefore prayed for his fellow believers often. John 17:15 is Jesus praying for Christians, not that we would be removed from the world, but that we would withstand the evil in the world. 2 Corinthians 13:7 is saying he is praying that he fellow Christians would do no evil. We are brothers and sisters in Christ, we are fighting the same fight. We should be praying for each other. We should be praying for strength, wisdom, a pure heart, etc for our brothers. We should have hard feelings or disagreements with our fellow Christians that keep us from being able to pray for them. If I want my brothers to pray for me, am I being faithful in praying for them?
"that ye may be healed." The word "that" is a conditional word. This will happen if that has happened. If we want to experience healing we need to be praying for our brothers in Christ and have confessed our sins. The word "healed" means to be cured, to be made whole. It means a miracle! When doctors have no cure, only temporary fixes and God heals - it is complete!
"The effectual fervent prayer" The word effectual is similar to effective. Fervent means marked by great intensity of feeling, zealous. So our prayer for healing is to be effective and of great passion to us, something we care about greatly, something we are zealous about. If I don't care about the person asking for healing, I would not be good to pray for them because God wants to see us pour our hearts out before Him!
"of a righteous man" The elders who are called to anoint with oil need to be righteous men. They must be men who are keeping the commands of God, innocent, guiltless, whose way of thinking, feeling, and living is to have his will fully conformed to the will of God.
"availeth much." Availeth means to be strong, to have power, to have strength to overcome. The prayers of righteous men are powerful, they have the strength to overcome anything. They have the strength to overcome what the doctors have said, the have the power to change a medical condition!
Going through all this leads me to the only conclusion I can come to if I read the Bible and take it literally. If we gather righteous men of our church and in FAITH ask God to heal Dillon's hip - he will! Do I believe it though? Do I have faith to believe that God can move a hip back into socket and keep it from coming out again? Do I have faith to believe that even though the doctors have stated Dillon will need several surgeries, that God can change all that? I don't know... it is HARD. It is easy to answer yes, but to really examine my heart and see if I believe is hard. But I know I can be like the father of the child with a demon and ask God to help my unbelief! If I (we) can trust God to hold our eternity secure in His hands, to not falter on His promise of eternal life with Him, why can we not trust Him to fulfill His promise for physical healing here on this earth? Why is it easier to trust for something "obscure" than it is for something concrete? If I am trusting His promise that believing His blood was payment for my sin, and that His Resurrection conquered sin and death... then can I not trust His promise that if we pray with faith He will heal?
Dillon's doctor said that Dillon is "On the yellow brick road, but a long way from the Emerald City. He is just stopping to pick up the scare crow." (Gotta love Doctor Gelman!)
Translation: He is doing better but he is still not healthy. His lungs still don't sound too good from the RSV and pneumonia he had. Doctor Gelman wants us to keep both boys home from church this weekend as he is afraid of one of them coming in contact with someone who is sick. Dillon's lungs are not strong enough to handle another sickness right now without another "hotel" (hospital) stay. Doctor Gelman wants to see Dillon again on Monday to check his lungs and see if he is ready to start using less albuterol and atrovent.
Dillon's surgery was moved to March 26 because they want him as the first surgery of the day (they cannot keep him without food for too long on this diet). However, the child that was already scheduled for the 19th also needs to be the first surgery so we will be scheduled for the 26.
Dillon's acupuncturist worked on him on Friday. She put some needles in his lower back, hips, and down his legs. She also gave him a massage and taught us how to massage his legs and lower back. She wants us to have everyone in the house do a 30 minute massage on him each day. We are going to have to try hard to get this done - everyday! I was able to massage him for almost an hour tonight on Friday and off and on all day Saturday so that is a good start. We got about 13 inches of snow so the boys and I were in all day anyways.
I feel very discouraged with it all though. I don't know if discouraged is the right word, I feel like my hands are tied, like I am fighting a losing battle. Despite all our daily work with Dillon - the patterning, the masking, the 5 therapist I have in my home every week sicne he was born, the stander, the chair, the AFO's, trying to change his positions, keeping him moving all day instead of just laying in bed, keeping him as active as possible, etc - his muscles are still so tight it dislocated his hip! Even if we are able to avoid surgery in March - the timer is ticking away till the next time it will happen. I don't know how I can avoid this for life... it is impossible! Eventually Dillon WILL have to have these surgeries, casting, and braces. I think I would have to spend more time than I have everyday just massaging his legs to try to avoid it - and will it even work? Now I understand why parents do the surgeries, what choice do we have?
The last paragraph is written from a human stand point. We have no other choice, these surgeries are inevitable... without God. However, we know the one who CAN win this battle, who CAN fix his hip problems. Question is - do I have faith? James 5:14-16 "Is any sick among you? let him call for the elders of the church; and let them pray over him, anointing him with oil in the name of the Lord: And the prayer of faith shall save the sick, and the Lord shall raise him up; and if he have committed sins, they shall be forgiven him. Confess your faults one to another, and pray one for another, that ye may be healed. The effectual fervent prayer of a righteous man availeth much."
I want to study this passage part by part. I have heard many different explanations of this verse that try to make it so that it doesn't mean what it reads. So I want to go part by part and examine what it says.
"Is any sick among you?" James was written to the twelve tribes which are scattered abroad. It was written to Christians who were not in just one church, but to the Christians all over. If the rest of the book of James applies to us as Christians today, then so does this verse. I don't believe we can say the book of James is for us - except James 5:14-16. Dillon is not a Jew, nor is he a "Christian" (due to his age and mental understanding it is not possible for him to have placed his trust in Christ alone.) However, he is apart of our family and Josiah and I have placed our trust in Christ and are God's children. He also belongs to God as God covers the babies who are not able to understand what He did on the cross.
"let him call for the elders of the church;" The term elder could refer to the members of the Sanhedrin - except that the Bible makes it clear that it is talking about the church. The members of the Sanhedrin would not have been in the church. Therefore it has to be talking about the Pastors, deacons, teachers, etc in the church. The men who were the Shepherds of the church.
"and let them pray over him," The word pray is used 306 times in this tense. Christ commands us to pray over and over again. Why would he command us to pray? Because it works! Mark 11:24 says "Therefore I say unto you, What things soever ye desire, when ye pray, believe that ye receive them, and ye shall have them." Matthew 17:20 says " And Jesus said unto them, Because of your unbelief; for verily I say unto you, If ye have the faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you." Luke 17: 6 says " And the Lord said, If ye had faith as a grain of mustard seed, ye might say unto this sycamine tree, Be thou plucked up by the root, and be thou planted in the sea; and it should obey you." Prayer works!
"anointing him with oil in the name of the Lord:" The oil here would be probably be olive oil. Olive oil is seen throughout the Old Testament as a offering to the Lord. It used used on the alters with the sacrifices to God. Olive oil was poured on the head of the man God wanted to appoint. It seems to be a symbol of one being set apart by God to do His work. It was commanded to the Jews in Exodus to be "an holy anointing oil unto me throughout your generations." Oil is associated with worship through out the whole Old testament as well. Olive oil was used to set apart the tabernacle and the things that were in it as being holy and for God. Olive oil was used in the cleansing process for when people sinned against God. The oil was used in the lamps to keep them burning as well. In Mark the Bible talks about the disciples using oil to anoint and heal the sick.
"And the prayer of faith shall save the sick," Prayer and faith are often found together in the Bible. In the verses already used, we see that only by faith is our prayer effective. We can move mountains - if we only have faith. Faith is the core, the essence of everything. James 1:5-7 says that if a man wants wisdom he needs to ask - but he needs to ask with faith. "If any of you lack wisdom, let him ask of God, that giveth to all men liberally, and upbraideth not; and it shall be given him. But let him ask in faith, nothing wavering. For he that wavereth is like a wave of the sea driven with the wind and tossed. For let not that man think that he shall receive any thing of the Lord." If we are going to anoint a sick person with oil and pray for God to heal that person - we must have faith that God will heal. James tells us that if we waver in our faith God will not give us what we are asking for. I believe this is the main reason so many people want to excuse this passage away. They don't have the faith to believe that God will heal someone. Do I have enough faith? No I don't. I need God to help me. Mark 9:17-29 is about a father who asked the disciples to remove a demon from his son. But the disciples were unable to. So the father asks Jesus. Verses 23-24 say "Jesus said unto him, If thou canst believe, all things are possible to him that believeth. And straightway the father of the child cried out and said with tears, Lord I believe; help thou mine unbelief." I think this father is saying that he wants to believe and does believe to the best he can, but is asking Jesus to help him if he has any doubts so that he can more fully believe. Jesus then granted this father's request and cast the demon out of his child.
If you stop and think about it - do you, do I, have the faith to pray and believe that God will heal Dillon's hips? It is hard, but I believe through fasting, prayer, and asking God to help our unbelief we can have the faith to go to God and ask him to heal Dillon.
"And the Lord shall raise him up;" Whenever we see God heal a person in the Bible it is immediate. I believe if God heals the person it will be known right away so that the full glory can go to God and God alone for what He has done. He will raise the person right then. Remember the lame men that were healed, they were always told to stand up and walk - right then. If the healing didn't come right away then the healing could be attributed to any number of other things. When God performs a miracle, I believe He does it so that He gets the glory for it. Another thing I notice in this phrase is also in the last phrase... the would "shall". Webster's dictionary says the word shall is a command, used to express what is mandatory, used to express what is inevitable, etc. There is no "wiggle room" in this word. It says if you pray in faith it WILL happen. The only variable here is if we will do our part. God will fulfill His promise if we do what we are told to do.
"and if he hath committed sins, they shall be forgiven him." This is another part that is used to say that the Bible doesn't really say what it seems to say. This verse says IF he hath sinned. This verse does NOT say this is only for those who are sick because of their sin, as I have been taught by some. We learn in 1 Peter 3:7 that is husband and wife are at odds our prayers are hindered. Proverbs 28:9 tells us that if we refuse to hear the law our prayers "shall be abomination." Mark 11:26 says "And when ye stand praying, forgive, if ye have ought against any: that your Father also which is in heaven may forgive you your trespasses." Psalm 66:18 says "If I regard iniquity in my heart, the Lord will not hear me:" There are several things in the Bible that will hinder our prayers being answered. So before we can go to God in faith and ask him to heal, we must have clean hearts before God. Of course, we have all sinned, so I don't think this verse is saying it can only be done if the person is perfect. But we must each make sure that we are pure before the Lord and that if there is any known sin in our life that it is confessed and forsaken before entering into this process. The verse is telling us that if we do confess sins that may be hindering our prayers - God will forgive us so we can have pure hearts and have our prayer heard.
"Confess your faults one to another," This goes along with the verse above, Mark 11:26. Matthew 18:15 says " Moreover if they brother shall trespass against thee, go and tell him his fault between thee and him alone: if he shall hear thee, thou hast gained they brother." Matthew 5:23-24 says, "Therefore if thou bring they gift to the altar, and there rememberest that thy brother hath ought against thee; Leave there thy gift before the altar, and go thy way; first be reconciled to they brother, and then come and offer thy gift." Over and over again we are told to have nothing between us and a brother in Christ before we can worship God.
"and pray one for another," How many times do we read of Paul telling a church that he is praying for them? That his prayers don't stop, that they are always in his prayers? Many times. Paul understood the power of prayer and therefore prayed for his fellow believers often. John 17:15 is Jesus praying for Christians, not that we would be removed from the world, but that we would withstand the evil in the world. 2 Corinthians 13:7 is saying he is praying that he fellow Christians would do no evil. We are brothers and sisters in Christ, we are fighting the same fight. We should be praying for each other. We should be praying for strength, wisdom, a pure heart, etc for our brothers. We should have hard feelings or disagreements with our fellow Christians that keep us from being able to pray for them. If I want my brothers to pray for me, am I being faithful in praying for them?
"that ye may be healed." The word "that" is a conditional word. This will happen if that has happened. If we want to experience healing we need to be praying for our brothers in Christ and have confessed our sins. The word "healed" means to be cured, to be made whole. It means a miracle! When doctors have no cure, only temporary fixes and God heals - it is complete!
"The effectual fervent prayer" The word effectual is similar to effective. Fervent means marked by great intensity of feeling, zealous. So our prayer for healing is to be effective and of great passion to us, something we care about greatly, something we are zealous about. If I don't care about the person asking for healing, I would not be good to pray for them because God wants to see us pour our hearts out before Him!
"of a righteous man" The elders who are called to anoint with oil need to be righteous men. They must be men who are keeping the commands of God, innocent, guiltless, whose way of thinking, feeling, and living is to have his will fully conformed to the will of God.
"availeth much." Availeth means to be strong, to have power, to have strength to overcome. The prayers of righteous men are powerful, they have the strength to overcome anything. They have the strength to overcome what the doctors have said, the have the power to change a medical condition!
Going through all this leads me to the only conclusion I can come to if I read the Bible and take it literally. If we gather righteous men of our church and in FAITH ask God to heal Dillon's hip - he will! Do I believe it though? Do I have faith to believe that God can move a hip back into socket and keep it from coming out again? Do I have faith to believe that even though the doctors have stated Dillon will need several surgeries, that God can change all that? I don't know... it is HARD. It is easy to answer yes, but to really examine my heart and see if I believe is hard. But I know I can be like the father of the child with a demon and ask God to help my unbelief! If I (we) can trust God to hold our eternity secure in His hands, to not falter on His promise of eternal life with Him, why can we not trust Him to fulfill His promise for physical healing here on this earth? Why is it easier to trust for something "obscure" than it is for something concrete? If I am trusting His promise that believing His blood was payment for my sin, and that His Resurrection conquered sin and death... then can I not trust His promise that if we pray with faith He will heal?
Wednesday, February 03, 2010
Ortho Appointment
Do I want to start with facts or emotion? I've been able to hold my emotions together so far, but I know it won't last, so I will write the facts first I guess...
Ortho said that the right hip is fine. The position of the legs in the X-rays were not very good which made the right one look out (but it isn't) and made the left one look worse than it is (but it IS out). The doctor looked back at an upper GI X-ray from 2008 and saw that at that point the hips were both in place. I really believe it has only been out the last couple of months when were were hearing a clicking sound with patterning so that is a good thing.
It is hard to sum up everything that was talked about - but basically surgery is scheduled for March 19. Planning to be there at least 48 hours - that is IF Dillon handles the surgery well. They have to go in and cut a tendon in the leg to loosen that muscle and inject a dye into the joint to see if the socket is able to hold the hip ball. If it is able to; between the cut tendon and the fact that he will be under anesthesia they are hoping to pop the hip back into place. If they cannot because the socket is too shallow they will then have to go in and clean out the socket and then put it into place. Changing the 30 minute surgery into 3 hours and changing the number of future surgeries that he will require. No matter which they do, however, he is facing more surgeries in the coming years. The less they have to do now the better for him. If they have to clean the socket out this time - then the next surgery will probably be a bony surgery where they will actually cut the leg, re-angle the bone and use pins and screws to hold it in place. However, if this is done before the age of 10-12 it WILL fail and he will have to go through it again. If we can mange to delay the bony surgery until at least 12 years of age it probably will not fail and he may not need it again. The reason for this is if he is still young his bone is going to "correct" itself and grow back the way it wants to, which will be straight instead of at the angle they want it at.
After the surgery on March 19 - he will have to be in a half body cast for 4 weeks. The cast will go from just below his feeding tube in his stomach down both his legs - which will be in Y position. The left leg will either go to his ankle or possibly to his toes. If they don't need to cut the tendon on the right leg (they will inject the dye in it just to be sure while they are in there) then the right leg may only have to go to the knee, or it might go to the ankle as well. They will try to be able to get him in a oversized car seat, but sometimes they have to take the child home in an ambulance and bring them back in an ambulance 4 weeks later to cut it off because they just don't fit in a car seat. So if that is the case he would be stuck in the house for 4 weeks. They will see about getting us a reclined wheelchair that he would fit in for this time period so we can take him out.
So, why is it dislocated? It is a very common problem with children with Cerebral palsy because their muscles are so tight it is actually pulling the hip out of place. Dillon is on the young side to have it out already which shows the severity of his CP and it also means that he will have more surgeries in his future.
They said there is no rush to get this surgery done, but I believe this hip has only been out for a few months, so I don't want to wait and chance the socket filling in and requiring the more extensive surgery. Plus, if it needs to be done in the near future, I would rather get it done and over with and have the casts off before the baby comes in May. Once the baby is here - it will change things so much and make it just that much harder to deal with surgery and care for him while in the casts.
I am praying for a miracle, though. I still believe God can allow this to be fixed without surgery. I am going to talk to my acupuncturist and see if she can loosen the muscles in his leg/hip area. I know she can do it in his arms and lower legs, so why not the hip? Then I am going to call chiropractors and see if the muscles is loose if they think the can move the hip back in without surgery. Please pray with me that God would allow this method to work - it would be so much better for Dillon! Then we could do braces and stretches to hopefully prevent the surgeries. Please pray with me that this might work! Otherwise it is surgery in a month, 4 weeks of lower body cast, and more hip surgeries in the future.
I was telling Robin today, that no matter what way God has us go, this is not in vain. God wouldn't allow him to go through this for no reason. There must be someone we can help because of what we will go through. I don't know who or why, but there has to be a reason for this...
Ortho said that the right hip is fine. The position of the legs in the X-rays were not very good which made the right one look out (but it isn't) and made the left one look worse than it is (but it IS out). The doctor looked back at an upper GI X-ray from 2008 and saw that at that point the hips were both in place. I really believe it has only been out the last couple of months when were were hearing a clicking sound with patterning so that is a good thing.
It is hard to sum up everything that was talked about - but basically surgery is scheduled for March 19. Planning to be there at least 48 hours - that is IF Dillon handles the surgery well. They have to go in and cut a tendon in the leg to loosen that muscle and inject a dye into the joint to see if the socket is able to hold the hip ball. If it is able to; between the cut tendon and the fact that he will be under anesthesia they are hoping to pop the hip back into place. If they cannot because the socket is too shallow they will then have to go in and clean out the socket and then put it into place. Changing the 30 minute surgery into 3 hours and changing the number of future surgeries that he will require. No matter which they do, however, he is facing more surgeries in the coming years. The less they have to do now the better for him. If they have to clean the socket out this time - then the next surgery will probably be a bony surgery where they will actually cut the leg, re-angle the bone and use pins and screws to hold it in place. However, if this is done before the age of 10-12 it WILL fail and he will have to go through it again. If we can mange to delay the bony surgery until at least 12 years of age it probably will not fail and he may not need it again. The reason for this is if he is still young his bone is going to "correct" itself and grow back the way it wants to, which will be straight instead of at the angle they want it at.
After the surgery on March 19 - he will have to be in a half body cast for 4 weeks. The cast will go from just below his feeding tube in his stomach down both his legs - which will be in Y position. The left leg will either go to his ankle or possibly to his toes. If they don't need to cut the tendon on the right leg (they will inject the dye in it just to be sure while they are in there) then the right leg may only have to go to the knee, or it might go to the ankle as well. They will try to be able to get him in a oversized car seat, but sometimes they have to take the child home in an ambulance and bring them back in an ambulance 4 weeks later to cut it off because they just don't fit in a car seat. So if that is the case he would be stuck in the house for 4 weeks. They will see about getting us a reclined wheelchair that he would fit in for this time period so we can take him out.
So, why is it dislocated? It is a very common problem with children with Cerebral palsy because their muscles are so tight it is actually pulling the hip out of place. Dillon is on the young side to have it out already which shows the severity of his CP and it also means that he will have more surgeries in his future.
They said there is no rush to get this surgery done, but I believe this hip has only been out for a few months, so I don't want to wait and chance the socket filling in and requiring the more extensive surgery. Plus, if it needs to be done in the near future, I would rather get it done and over with and have the casts off before the baby comes in May. Once the baby is here - it will change things so much and make it just that much harder to deal with surgery and care for him while in the casts.
I am praying for a miracle, though. I still believe God can allow this to be fixed without surgery. I am going to talk to my acupuncturist and see if she can loosen the muscles in his leg/hip area. I know she can do it in his arms and lower legs, so why not the hip? Then I am going to call chiropractors and see if the muscles is loose if they think the can move the hip back in without surgery. Please pray with me that God would allow this method to work - it would be so much better for Dillon! Then we could do braces and stretches to hopefully prevent the surgeries. Please pray with me that this might work! Otherwise it is surgery in a month, 4 weeks of lower body cast, and more hip surgeries in the future.
I was telling Robin today, that no matter what way God has us go, this is not in vain. God wouldn't allow him to go through this for no reason. There must be someone we can help because of what we will go through. I don't know who or why, but there has to be a reason for this...
Tuesday, February 02, 2010
Home Sweet Home!
We were able to bring Dillon home today! Thank you for all your prayers for him and for us. I don't know how I survived the first few days with so little sleep other than by your prayers for me! God gave me the strength I needed to stay alert each day even when I should have been dead on my feet!
The attending doctor walked in to listen to him today and said she heard wheezing - oh no! I was thinking "No you don't! Really! Just let me suction him!" But she turned him over and it was cleared out so we were free to come home. He has one more full day of antibiotics and is on 2 inhalers instead of his nebulizer.
They said he is past the worse of the RSV and should be getting better from here. The Pulm doctor said the RSV shots won't really help Dillon because all they do is lessen the effects a little, but in someone like Dillon he would still end up in the hospital. Good to know that even he thinks I shouldn't get it for Dillon.
The ICS thing I asked you to pray about - the Pulm doctor said how it works is next time Dillon has to be admitted tell them I want to talk to the ICS doctors and to get a hold of him to find out the details of why and all the info. He will then help us get into that program, but it is something I have to wait until we are there to do so the doctors on that team can get to know him while he is there. My doctor didn't see any reason why he shouldn't be able to go this route, though.
I am praying for some miracles... I would like to see Dillon beat his last record of 10 months with no antibiotics or hospitalizations! And I am praying that God would work a true miracle and fix his hips so he won't be in pain, won't be hindered in his ability to move, and won't have to face surgery in a few years! Both of these would be miracles - but so was no antibiotics or hospitalizations for 10 months, so was the fund raising for China, so was the trip to China going off without any problems, so is Dillon's life! Will you join me in praying for these things?
Tomorrow we are back to CHOP for the ortho appointment. I have had a lot of not so helpful people from Ortho so far, but the doctor we are seeing tomorrow is a hip specialist so hopefully he will answer some of my questions. Like are both hips dislocated or just one, can he stand in his new stander, if so should he have a lift under that leg, what positions would be hurting him, what do we do about it, can we do patterning, what do we do about the fact that he isn't using his one leg anymore, etc., etc.!
The attending doctor walked in to listen to him today and said she heard wheezing - oh no! I was thinking "No you don't! Really! Just let me suction him!" But she turned him over and it was cleared out so we were free to come home. He has one more full day of antibiotics and is on 2 inhalers instead of his nebulizer.
They said he is past the worse of the RSV and should be getting better from here. The Pulm doctor said the RSV shots won't really help Dillon because all they do is lessen the effects a little, but in someone like Dillon he would still end up in the hospital. Good to know that even he thinks I shouldn't get it for Dillon.
The ICS thing I asked you to pray about - the Pulm doctor said how it works is next time Dillon has to be admitted tell them I want to talk to the ICS doctors and to get a hold of him to find out the details of why and all the info. He will then help us get into that program, but it is something I have to wait until we are there to do so the doctors on that team can get to know him while he is there. My doctor didn't see any reason why he shouldn't be able to go this route, though.
I am praying for some miracles... I would like to see Dillon beat his last record of 10 months with no antibiotics or hospitalizations! And I am praying that God would work a true miracle and fix his hips so he won't be in pain, won't be hindered in his ability to move, and won't have to face surgery in a few years! Both of these would be miracles - but so was no antibiotics or hospitalizations for 10 months, so was the fund raising for China, so was the trip to China going off without any problems, so is Dillon's life! Will you join me in praying for these things?
Tomorrow we are back to CHOP for the ortho appointment. I have had a lot of not so helpful people from Ortho so far, but the doctor we are seeing tomorrow is a hip specialist so hopefully he will answer some of my questions. Like are both hips dislocated or just one, can he stand in his new stander, if so should he have a lift under that leg, what positions would be hurting him, what do we do about it, can we do patterning, what do we do about the fact that he isn't using his one leg anymore, etc., etc.!
Sunday, January 31, 2010
Update on Dillon
Thursday around 4:30 am we got a call from the hospital saying DIllon had a 30 minute seizure and that he was now in respiratory distress and being sent to the PICU. I started telling them it was NOT a seizure... he was wanting to be moved or comforted but his extensions were NOT seizures.
Josiah and I are tired of this happening - this is the 4th time he has been admitted in a row where they ignore what we tell them and do what they want. Last time we got an EEG done to prove it, and it was exactly as we said. Those extension movements are purposeful. So at 4:30 am we woke Jay up (we had only gone to sleep around 1am) and came to the hospital.
We got to his PICU room to find about 10 people around him and the doctors wanting to insert a breathing tube. I asked them to just give him some time to calm down. He was moaning and groaning from all they had done to him. They tried to get an IV and failed, they did put another one in, they gave him 3.5 doses of a seizure drug, they stuck a nose trumpet (a large straw) down his nose past this throat, he was bleeding from his nose, they had him in jaw thrust, etc. They knew we were not happy about the seizure drugs and agreed to give him a few minutes. Sure enough as soon as they left him alone he calmed down and didn't even cough for over an hour.
I went down to talk to his nurse and the residents who administered the drugs to find out directly from the source what happened to make sure it was the movement that I know is NOT a seizure. Here is what I was told (see how many contradictions you can count!):
Main Nurse: She had NO idea how many times he had the movements that I told her were seizures during this 30 minutes. I asked over and over and over for a ball park idea of how many she saw. Her answer: I don't know, I have no idea. (What on earth is she putting in her nurse's note if she didn't bother to count at all??) Finally after I pushed her for an answer and wouldn't stop she finally said 2-3 in a ten minute time. (Hello! I told them he has 30-40 in a day so 2-3 is not a lot! Especially since I told them he does have clusters - so when he has one he usually has several in a row.) She told me Dillon's oxygen was in the 70's. I asked if it was a real read because at home if he is tight it might say 60-70% but as soon as you get him sitting it jumps to 99% or so, therefore it was not able to pick up a good read with him that tight. She told me they had a beautiful wave on the oxygen reading so they KNOW it was a real read.
Resident 1: She was quite mad at me for questioning their decision at all and didn't understand why I was upset. The resident who admitted Dillon walked up to us when she was talking to me and was asking where Dillon went and she was yelling at him to "just leave" and that she would talk to him later but to just leave. He looked at me very confused because he was the one who thought Dillon was ready to go home by Friday morning. I asked this resident who was in the room if anyone in this time pulled up his neuro report to see what IS and what is NOT a seizure. She said "30 minutes isn't as long as you think." Again I asked if someone, anyone at all was trying to look at the reports. Finally she said no. She said his heart rate was over 200. I asked did anyone look to see if he has a cardio report on file because his cardiologist has cleared him to be over 200 as long as it isn't for months at a time. She refused to answer me and I point blank told her to stop side stepping my questions and give me a straight answer. She still wouldn't so I said "So that's a no?" Finally she said no, no one tried to see what his cardio records were.
Senior Resident: Again, he was quite annoyed with me for questioning him (and writing everything he told me down) But by the end of our conversation I think he at least understood why I was upset at this happening AGAIN. But here is his version of what happened. Dillon was extremely tight. He said he knew that the "scissor motion" that he makes with his legs is not a seizure, but this wasn't a full scissor motion - this was a thumping. I asked did you think of the fact that he has a dislocated hip and that he just may not be able to do the full motion... no. He told me Dillon's heart rate was in the high 200's. I asked what does that mean 280?? He said 240-250. Then later in the conversation he said 260. So I asked which is was. He said he wouldn't give me an answer that I could look at the machine when it came back from the PICU to see if I want. He told me Dillon's oxygen was in the 70's the whole time.
Helping nurse: Said the whole time she was in the room she never saw a single time when he had the seizure movement that I described to them... NOT ONE! She was the nurse who recorded the vitals and told me his heart never went above 215. She told me that majority of the time this was going on the machine was not even picking up an oxygen read at all! Not that it wasn't a good reading - but that there was no reading at all because he was so tight.
Needless to say I was NOT happy. When I was going over everything with the neuro resident he finally said "So we have no idea what really happened." And that it is like a bank robbery where there are 100 witness and everyone's story is different. So then the Attending Neuro came in and said that Dillon is scheduled for more drugs he wants Dillon to continue to get seizure drugs. I said "no, there's no reason for them" He said that when his residents were in the room Dillon had two seizures and he tightened some. I was here! He tightened right after they had just been pounding on his knees, ankles, and arms to test reflexes. So I told him no to the drugs. Oh yeah, he also said that Dillon was Dilantin - which he NEVER GOT this trip, they used a different one. So the attending had not even read the record close enough to know what medicine they used! (After he left I asked the nurse when was he schedule to get these drugs again- he wasn't! The attending neuro didn't know what he was talking about again!) I asked him if he had read Dillon's last EEG report. He told me he didn't read the EEG. I asked again, "No, I don't mean the EEG, did you read the report from the lasts EEG?" "No." So here he is coming into our room, not knowing what drugs Dillon had been given, not knowing if he was scheduled for more or not, and not having read the last report even though he knew there was disagreements between if this was or was not a seizure!!!!! He ordered for another 24 hour EEG - so that this won't happen again if it isn't. I asked what good would that do - we did that exact thing last time and it didn't help at all. I asked if we have to put him on an EEG the moment his gets here every single time? Nevertheless he ordered for the EEG again.
They kept the nasal trumpet in Dillon with CPAP going through it. When they took that out on Friday he did great. His heart rate actually went down and his oxygen went up! He was on only 1-1.5 LMP with the nasal cannula yesterday and his CPAP at night. He did have to have a little more oxygen with the CPAP than normal though. Today he is on 1 L and doing great. They are trying to move him from PICU back to Pulm floor but there is no bed open at the moment.
Oh yeah - and just for anyone who was still wondering - Neuro came back yesterday and told me that NONE OF THE EXTENSION MOVEMENTS ARE SEIZURES!!!! Imagine that, exactly what I told them was proven right again! All his seizures were less than 10 seconds each! They didn't have a count yet on how many he had in the 24 hours, but I have requested the report so I will find out soon. We now have a sign posted above his bed that says what is and is not a seizure. We put on there what to do for him if he is in extension and to please read the neuro reports. Hopefully this will help. But I still don't want him here alone at night. I don't trust them, they do what they want. They don't listen to me. It is always at night with the residents that this happens. They haven't learned to trust Moms yet, they still think they are smarter than Moms and that we don't know what we are talking about. Josiah had to work last night so after 5 nights of very little sleep I got to sleep at the Ronald McDonald house with Jay while he stayed here and worked during the night. Oh the neuo told me they might still use these drugs - even if it isn't a seizure - just because he was tight. I asked them if they would walk into a room with a normal 3 year old that was red in the face, high heart rate, high respiration, tight muscles because he is throwing a temper tantrum in the middle of the night and drug HIM with seizure drugs. They said "no." "So why are you doing it to Dillon?" I asked. They had no good answer. I told them they need to learn to reposition and comfort rather than drug when a 3 year old is upset in the middle of the night.
We did get X-rays. Dillon's hip is dislocated. But Ortho told our docs that they didn't have time to come talk to be about how to position Dillon - that we should just figure it out based on how he tolerates it. HELLO!?!?! So our resident kept calling and finally got a ortho resident to come talk to me. But he didn't know much. He kept saying things like "But this is just my opinion, I'm not really sure, you should talk to an attending, that is just what I see in the X-ray but an attending might see something different." Great you're a help. He told me that no position will make it worse, but couldn't tell me what might be hurting him. He told me he thinks the hip has been out since birth and that he will have to have surgery in a few years to grind out the hip socket that it isn't formed right. "But he doesn't know for sure." He doesn't know if Dillon should have a lift under him in the stander or not - let me PT decide. But she doesn't deal with dislocated hips much so she already told me she wasn't sure. Ortheo should be telling me this. He thinks our patterning is ok - as long as he tolerates it. Is he not getting the fact that Dillon can't tell me "Ouch, or mommy that hurts"??? How am I supposed to know if he is mad that it hurts, that something else hurts, or that he is just mad that I am making him do therapy. I don't know! GRRRRR - is anyone guessing how frustrated I am by now?
Sorry this is long, I know people were wondering how we went from "we should be out tomorrow" - to the PICU for several more days. Please pray about this The senior resident that gave him the drugs told me about a program here called ICS which means that if he is selected for it when he gets admitted it would be in a different part of the hospital where the same team of 4-5 docs and nurses would always be in charge of his care. This would make a HUGE difference! The doctors would all know what is a seizure, what is not, what to do for his extension movements, etc. The only reason he went into resp distress is because of what they did to him. It was horrible and it was all unnecessary and it is the FOURTH time this has happened to him here. Please pray we would be able to get into this ICS so this doesn't keep happening to him. I have to talk to my Puml doctor - I am hoping I can find him Monday - and see if he can help me get into it. They are very selective of course in order for it to be what it is, but I am hoping they will let him in. He can't keep getting 3 doses of seizure drugs for no reason.
Please keep praying for us. Dillon had a fever of 102 yesterday, but that is normal for RSV. We are all tired and it is plain annoying to deal with this nonsense. I can't wait to come home. Thank you to everyone who has emailed, posted on facebook, and sent the CHOP ecards. It is encouraging to know that people are praying (in fact I am sure that is the only reason I have had the strength each day to keep going!!)
Josiah and I are tired of this happening - this is the 4th time he has been admitted in a row where they ignore what we tell them and do what they want. Last time we got an EEG done to prove it, and it was exactly as we said. Those extension movements are purposeful. So at 4:30 am we woke Jay up (we had only gone to sleep around 1am) and came to the hospital.
We got to his PICU room to find about 10 people around him and the doctors wanting to insert a breathing tube. I asked them to just give him some time to calm down. He was moaning and groaning from all they had done to him. They tried to get an IV and failed, they did put another one in, they gave him 3.5 doses of a seizure drug, they stuck a nose trumpet (a large straw) down his nose past this throat, he was bleeding from his nose, they had him in jaw thrust, etc. They knew we were not happy about the seizure drugs and agreed to give him a few minutes. Sure enough as soon as they left him alone he calmed down and didn't even cough for over an hour.
I went down to talk to his nurse and the residents who administered the drugs to find out directly from the source what happened to make sure it was the movement that I know is NOT a seizure. Here is what I was told (see how many contradictions you can count!):
Main Nurse: She had NO idea how many times he had the movements that I told her were seizures during this 30 minutes. I asked over and over and over for a ball park idea of how many she saw. Her answer: I don't know, I have no idea. (What on earth is she putting in her nurse's note if she didn't bother to count at all??) Finally after I pushed her for an answer and wouldn't stop she finally said 2-3 in a ten minute time. (Hello! I told them he has 30-40 in a day so 2-3 is not a lot! Especially since I told them he does have clusters - so when he has one he usually has several in a row.) She told me Dillon's oxygen was in the 70's. I asked if it was a real read because at home if he is tight it might say 60-70% but as soon as you get him sitting it jumps to 99% or so, therefore it was not able to pick up a good read with him that tight. She told me they had a beautiful wave on the oxygen reading so they KNOW it was a real read.
Resident 1: She was quite mad at me for questioning their decision at all and didn't understand why I was upset. The resident who admitted Dillon walked up to us when she was talking to me and was asking where Dillon went and she was yelling at him to "just leave" and that she would talk to him later but to just leave. He looked at me very confused because he was the one who thought Dillon was ready to go home by Friday morning. I asked this resident who was in the room if anyone in this time pulled up his neuro report to see what IS and what is NOT a seizure. She said "30 minutes isn't as long as you think." Again I asked if someone, anyone at all was trying to look at the reports. Finally she said no. She said his heart rate was over 200. I asked did anyone look to see if he has a cardio report on file because his cardiologist has cleared him to be over 200 as long as it isn't for months at a time. She refused to answer me and I point blank told her to stop side stepping my questions and give me a straight answer. She still wouldn't so I said "So that's a no?" Finally she said no, no one tried to see what his cardio records were.
Senior Resident: Again, he was quite annoyed with me for questioning him (and writing everything he told me down) But by the end of our conversation I think he at least understood why I was upset at this happening AGAIN. But here is his version of what happened. Dillon was extremely tight. He said he knew that the "scissor motion" that he makes with his legs is not a seizure, but this wasn't a full scissor motion - this was a thumping. I asked did you think of the fact that he has a dislocated hip and that he just may not be able to do the full motion... no. He told me Dillon's heart rate was in the high 200's. I asked what does that mean 280?? He said 240-250. Then later in the conversation he said 260. So I asked which is was. He said he wouldn't give me an answer that I could look at the machine when it came back from the PICU to see if I want. He told me Dillon's oxygen was in the 70's the whole time.
Helping nurse: Said the whole time she was in the room she never saw a single time when he had the seizure movement that I described to them... NOT ONE! She was the nurse who recorded the vitals and told me his heart never went above 215. She told me that majority of the time this was going on the machine was not even picking up an oxygen read at all! Not that it wasn't a good reading - but that there was no reading at all because he was so tight.
Needless to say I was NOT happy. When I was going over everything with the neuro resident he finally said "So we have no idea what really happened." And that it is like a bank robbery where there are 100 witness and everyone's story is different. So then the Attending Neuro came in and said that Dillon is scheduled for more drugs he wants Dillon to continue to get seizure drugs. I said "no, there's no reason for them" He said that when his residents were in the room Dillon had two seizures and he tightened some. I was here! He tightened right after they had just been pounding on his knees, ankles, and arms to test reflexes. So I told him no to the drugs. Oh yeah, he also said that Dillon was Dilantin - which he NEVER GOT this trip, they used a different one. So the attending had not even read the record close enough to know what medicine they used! (After he left I asked the nurse when was he schedule to get these drugs again- he wasn't! The attending neuro didn't know what he was talking about again!) I asked him if he had read Dillon's last EEG report. He told me he didn't read the EEG. I asked again, "No, I don't mean the EEG, did you read the report from the lasts EEG?" "No." So here he is coming into our room, not knowing what drugs Dillon had been given, not knowing if he was scheduled for more or not, and not having read the last report even though he knew there was disagreements between if this was or was not a seizure!!!!! He ordered for another 24 hour EEG - so that this won't happen again if it isn't. I asked what good would that do - we did that exact thing last time and it didn't help at all. I asked if we have to put him on an EEG the moment his gets here every single time? Nevertheless he ordered for the EEG again.
They kept the nasal trumpet in Dillon with CPAP going through it. When they took that out on Friday he did great. His heart rate actually went down and his oxygen went up! He was on only 1-1.5 LMP with the nasal cannula yesterday and his CPAP at night. He did have to have a little more oxygen with the CPAP than normal though. Today he is on 1 L and doing great. They are trying to move him from PICU back to Pulm floor but there is no bed open at the moment.
Oh yeah - and just for anyone who was still wondering - Neuro came back yesterday and told me that NONE OF THE EXTENSION MOVEMENTS ARE SEIZURES!!!! Imagine that, exactly what I told them was proven right again! All his seizures were less than 10 seconds each! They didn't have a count yet on how many he had in the 24 hours, but I have requested the report so I will find out soon. We now have a sign posted above his bed that says what is and is not a seizure. We put on there what to do for him if he is in extension and to please read the neuro reports. Hopefully this will help. But I still don't want him here alone at night. I don't trust them, they do what they want. They don't listen to me. It is always at night with the residents that this happens. They haven't learned to trust Moms yet, they still think they are smarter than Moms and that we don't know what we are talking about. Josiah had to work last night so after 5 nights of very little sleep I got to sleep at the Ronald McDonald house with Jay while he stayed here and worked during the night. Oh the neuo told me they might still use these drugs - even if it isn't a seizure - just because he was tight. I asked them if they would walk into a room with a normal 3 year old that was red in the face, high heart rate, high respiration, tight muscles because he is throwing a temper tantrum in the middle of the night and drug HIM with seizure drugs. They said "no." "So why are you doing it to Dillon?" I asked. They had no good answer. I told them they need to learn to reposition and comfort rather than drug when a 3 year old is upset in the middle of the night.
We did get X-rays. Dillon's hip is dislocated. But Ortho told our docs that they didn't have time to come talk to be about how to position Dillon - that we should just figure it out based on how he tolerates it. HELLO!?!?! So our resident kept calling and finally got a ortho resident to come talk to me. But he didn't know much. He kept saying things like "But this is just my opinion, I'm not really sure, you should talk to an attending, that is just what I see in the X-ray but an attending might see something different." Great you're a help. He told me that no position will make it worse, but couldn't tell me what might be hurting him. He told me he thinks the hip has been out since birth and that he will have to have surgery in a few years to grind out the hip socket that it isn't formed right. "But he doesn't know for sure." He doesn't know if Dillon should have a lift under him in the stander or not - let me PT decide. But she doesn't deal with dislocated hips much so she already told me she wasn't sure. Ortheo should be telling me this. He thinks our patterning is ok - as long as he tolerates it. Is he not getting the fact that Dillon can't tell me "Ouch, or mommy that hurts"??? How am I supposed to know if he is mad that it hurts, that something else hurts, or that he is just mad that I am making him do therapy. I don't know! GRRRRR - is anyone guessing how frustrated I am by now?
Sorry this is long, I know people were wondering how we went from "we should be out tomorrow" - to the PICU for several more days. Please pray about this The senior resident that gave him the drugs told me about a program here called ICS which means that if he is selected for it when he gets admitted it would be in a different part of the hospital where the same team of 4-5 docs and nurses would always be in charge of his care. This would make a HUGE difference! The doctors would all know what is a seizure, what is not, what to do for his extension movements, etc. The only reason he went into resp distress is because of what they did to him. It was horrible and it was all unnecessary and it is the FOURTH time this has happened to him here. Please pray we would be able to get into this ICS so this doesn't keep happening to him. I have to talk to my Puml doctor - I am hoping I can find him Monday - and see if he can help me get into it. They are very selective of course in order for it to be what it is, but I am hoping they will let him in. He can't keep getting 3 doses of seizure drugs for no reason.
Please keep praying for us. Dillon had a fever of 102 yesterday, but that is normal for RSV. We are all tired and it is plain annoying to deal with this nonsense. I can't wait to come home. Thank you to everyone who has emailed, posted on facebook, and sent the CHOP ecards. It is encouraging to know that people are praying (in fact I am sure that is the only reason I have had the strength each day to keep going!!)
Thursday, January 28, 2010
RSV and pneumonia
Dillon has RSV and pneumonia. :o( His fever has been good during the night and they have him on just 1.5 L all night. They tried in the ER and on the floor to put him on CPAP, but with CPAP he was needing 8+LMP! NO one understands that at all, other than he just doesn't want the CPAP right now. They have him on a IV antibiotic and know that we want to be able to take him home as soon as possible. They need to see him back to base line on his breathing (how much oxygen, interfaced used, and work to breathe) and able to be on CPAP again for the nights before he could go home. He was on the oxygen mask until about 6am I think when we were finally able to put him on nasal cannula.
We were brought to 5South08 around 2:30-3 am and didn't even get to TRY to sleep till 4 am. And then of course between doctors, nurses, medicine, beeping, coughing etc.... well we got very little sleep.
Josiah is leaving me his phone today, but I am going to try to get my room phone if people want to call. CHOP now has computers in the room so that is nice! And we have a private room so when I get Jay we will be able to be in here. I am going to call the Ronald McDonald House and see if we can get a room for tonight.
We were brought to 5South08 around 2:30-3 am and didn't even get to TRY to sleep till 4 am. And then of course between doctors, nurses, medicine, beeping, coughing etc.... well we got very little sleep.
Josiah is leaving me his phone today, but I am going to try to get my room phone if people want to call. CHOP now has computers in the room so that is nice! And we have a private room so when I get Jay we will be able to be in here. I am going to call the Ronald McDonald House and see if we can get a room for tonight.
Wednesday, January 27, 2010
Dillon is in CHOP ER
About 8pm tonight we rushed Dillon to CHOP's ER. We had him on 10-15 LMP of oxygen to maintain 88-92 with a oxygen mask. (He is normally on 0-2 LMP nasal canula, but even on 15 LMP with nasal canula he was dropping.) He has a fever of almost 102. JayDonn has been sick with 102+ fever, coughing and runny nose.
Not sure what is going on right now. They are doing a chest X-ray and trying to find a vein to do blood work.
Please pray - will update when we have more info.
THANK YOU!
Oh - Lori has JayDonn for us tonight. THANK YOU Lori!!!!!!
Not sure what is going on right now. They are doing a chest X-ray and trying to find a vein to do blood work.
Please pray - will update when we have more info.
THANK YOU!
Oh - Lori has JayDonn for us tonight. THANK YOU Lori!!!!!!
Saturday, January 23, 2010
Pictures!!
Some pictures that are long past due:
Dillon and Jay in their chairs. Jay does his school work in his desk and Dillon does therapy or eats when in his chair.
This is the stander I fought the insurance for over two years to get him. He finally has it! Praise the Lord! We were blessed to have equipment on loan until we got it, but these are fit exactly for Dillon with the all the right supports that he needs!
Playing while sitting in his chair.
Daddy and JayDonn on their bike. They love to go riding together. Jay says he is scared, but he really loves it!
The seat Josiah got him goes on the front instead of the back so he can talk to Jay while riding. Jay also thinks he can drive the bike this way.
We decided to set up the crib for the new baby tonight. Yes, it is very early. And yes, I am excited, but there is a reason for my madness... I don't want too much to change too quickly for Jay. I thought if we have the crib set up in Jay's room early he will be used to it and that is one less "change" that will happen all at once.
Here is Jay helping me wash the crib that was once his!
What a good little helper!
Dillon came up to help us too!
Ok so we are a little backwards from most people. Most people buy the first baby the new crib mattress, take the pictures of the Mommy's growing belly, etc. I didn't take any pictures of my belly with Dillon or Jay, but I am this time. Neither Dillon nor Jay got a new mattress, but this baby did. (Only because the other one was so old we threw it out after Dillon go this own bed, so we needed another one, but still....)
Daddy and Jay setting it up!
Jay's bed and the crib
Their dresser with a nice lamp Daddy put in their room. (Our neighbors leave their TV on all night pretty loud and Jay is scared so we have to have a fan on for white noise. This is why Jay created his imaginary friend, James. He wakes up crying for his fan to be turned on if we forget, so we just put it on every night.)
Of course Jay had to "try out" the new crib!
Dillon and Jay getting ready for their new baby brother or sister!
Hope you enjoyed the pictures. Have a great day in Church tomorrow!
Dillon and Jay in their chairs. Jay does his school work in his desk and Dillon does therapy or eats when in his chair.
This is the stander I fought the insurance for over two years to get him. He finally has it! Praise the Lord! We were blessed to have equipment on loan until we got it, but these are fit exactly for Dillon with the all the right supports that he needs!
Playing while sitting in his chair.
Daddy and JayDonn on their bike. They love to go riding together. Jay says he is scared, but he really loves it!
The seat Josiah got him goes on the front instead of the back so he can talk to Jay while riding. Jay also thinks he can drive the bike this way.
We decided to set up the crib for the new baby tonight. Yes, it is very early. And yes, I am excited, but there is a reason for my madness... I don't want too much to change too quickly for Jay. I thought if we have the crib set up in Jay's room early he will be used to it and that is one less "change" that will happen all at once.
Here is Jay helping me wash the crib that was once his!
What a good little helper!
Dillon came up to help us too!
Ok so we are a little backwards from most people. Most people buy the first baby the new crib mattress, take the pictures of the Mommy's growing belly, etc. I didn't take any pictures of my belly with Dillon or Jay, but I am this time. Neither Dillon nor Jay got a new mattress, but this baby did. (Only because the other one was so old we threw it out after Dillon go this own bed, so we needed another one, but still....)
Daddy and Jay setting it up!
Jay's bed and the crib
Their dresser with a nice lamp Daddy put in their room. (Our neighbors leave their TV on all night pretty loud and Jay is scared so we have to have a fan on for white noise. This is why Jay created his imaginary friend, James. He wakes up crying for his fan to be turned on if we forget, so we just put it on every night.)
Of course Jay had to "try out" the new crib!
Dillon and Jay getting ready for their new baby brother or sister!
Hope you enjoyed the pictures. Have a great day in Church tomorrow!
Wednesday, January 20, 2010
The happenings at the Kuenzi's
Some things that have been happening around here at the Kuenzi's house:
1. One day Jay was looking at a wedding picture of Josiah and I and commented on it. So I told him that was the day Mommy became Daddy's wife. Then I asked "Do you want a wife one day?" He put his elbow on the table and his head in his hand and very wistfully said "I want a wife one day." Of course, Robin and I laughed so he kept saying it! It was adorable! I got a video of it... I can't wait to show his wife one day and even better - play it at his wedding!
2. Yesterday we did all of Dillon's therapy with him and his nurse said he was so tired last night that he didn't even wake up when she was feeding him!
3. When we took Dillon last Wed to CHOP to get fitted for his stander he was very mad. The PT didn't have the stander locked all the way so when I put him in the whole thing fell backwards and jarred him pretty good. After that he was breathing heavy and was not happy for the whole time. We walked to the elevator and as I put his coat on him, he threw up. On the way home he coughed the whole time, his heart rate was over 200 and he was breathing heavy. He had a 102 fever when we got him home. We gave him a breathing treatment and tylenol. I kept him home from church and let him rest with his CPAP on so he could breathe easy. I fed him very slowly and every hour gave him oil of oraganol. By the next morning, his heart rate was down to 115-140's (normal range) and he did not get another temp. He was better! I really believe putting him on the CPAP so he wouldn't have to work so hard and the oil help him! Normally he would have gone on an antibiotic, but he didn't have to again this time! Praise the Lord!
4. Friday our stander and chair were brought to our home! After over two years of fighting the insurance companies he finally got his equipment! What a blessing! I have had him in it 4 times since we got it and he is doing well. He stands for the first 5 minutes good and then starts to wake up and fight it. He is only in for 10 minutes for now.
5. While we were getting fitted for the stander we saw that Dillon's left leg is shorter than the right. They put a block under his foot so he would stand right. We had seen this a few times before but thought it was just how he was laying. We see the doctor on Feb 8 - I have to ask him to check and see if Dillon is getting scoliosis or if it is a hip problem. I think a hip issue would be easier to treat, but I don't know... I guess we will just wait to see what Dr. Gelman says.
6. Jay slept for 11.5 hours last night - with NO DIAPER! He was dry in the morning! He did great! He is growing up so fast! Robin and I were praising him and he said "Awww, thank you! Thank you guys!" What a crazy little kid!
I think that is it for now, I will try to put more of Jay's crazy sayings on here...
Have a great evening in church everyone!
Tiffany
1. One day Jay was looking at a wedding picture of Josiah and I and commented on it. So I told him that was the day Mommy became Daddy's wife. Then I asked "Do you want a wife one day?" He put his elbow on the table and his head in his hand and very wistfully said "I want a wife one day." Of course, Robin and I laughed so he kept saying it! It was adorable! I got a video of it... I can't wait to show his wife one day and even better - play it at his wedding!
2. Yesterday we did all of Dillon's therapy with him and his nurse said he was so tired last night that he didn't even wake up when she was feeding him!
3. When we took Dillon last Wed to CHOP to get fitted for his stander he was very mad. The PT didn't have the stander locked all the way so when I put him in the whole thing fell backwards and jarred him pretty good. After that he was breathing heavy and was not happy for the whole time. We walked to the elevator and as I put his coat on him, he threw up. On the way home he coughed the whole time, his heart rate was over 200 and he was breathing heavy. He had a 102 fever when we got him home. We gave him a breathing treatment and tylenol. I kept him home from church and let him rest with his CPAP on so he could breathe easy. I fed him very slowly and every hour gave him oil of oraganol. By the next morning, his heart rate was down to 115-140's (normal range) and he did not get another temp. He was better! I really believe putting him on the CPAP so he wouldn't have to work so hard and the oil help him! Normally he would have gone on an antibiotic, but he didn't have to again this time! Praise the Lord!
4. Friday our stander and chair were brought to our home! After over two years of fighting the insurance companies he finally got his equipment! What a blessing! I have had him in it 4 times since we got it and he is doing well. He stands for the first 5 minutes good and then starts to wake up and fight it. He is only in for 10 minutes for now.
5. While we were getting fitted for the stander we saw that Dillon's left leg is shorter than the right. They put a block under his foot so he would stand right. We had seen this a few times before but thought it was just how he was laying. We see the doctor on Feb 8 - I have to ask him to check and see if Dillon is getting scoliosis or if it is a hip problem. I think a hip issue would be easier to treat, but I don't know... I guess we will just wait to see what Dr. Gelman says.
6. Jay slept for 11.5 hours last night - with NO DIAPER! He was dry in the morning! He did great! He is growing up so fast! Robin and I were praising him and he said "Awww, thank you! Thank you guys!" What a crazy little kid!
I think that is it for now, I will try to put more of Jay's crazy sayings on here...
Have a great evening in church everyone!
Tiffany
Thursday, January 07, 2010
Christmas and Ultrasound
First to catach up on Christmas 2009!
We had a great Christmas with just the four of us! It was the most relaxing Christmas I can remember. Jay woke up and came down stairs and saw the manger with Baby Jesus in it. We didn't have him in there until his birthday. He was excited about that. Then I told him to come look under the tree. He knew they were presents, but it was his next answer that was so sweet. I aske dhim who the presents are for "Dillon, and Jay, and Daddy and Mommy." He actually said they were for Dillon before himself even! I thought that was pretty sweet for a 2 year old.
On the 29th we drove to WV where Josiah's family was all together. His brother and his wife from Texas, his other brother and his girl friend from California, his parents, his sister, and us. We had a good time with them in WV for a few days then on the first we all came to our house. Even though my house was pretty full it was fun to spend time with everyone. Everyone was gone by the crack of dawn Tuesday morning.
Ultrasound!
The baby is so cute! I am supposed to be 20 weeks but the baby's head was measuring 20 weeks 5 days (oh no! big head!) We saw the baby moving around, putting an arm up over the head, she even got a picture of the baby opening his mouth while looking right at teh "camera"! Everything on the baby looks healthy.
And IT'S A ......
Ask the ultrasound lady - she knows - she saw but since I don't want to know she isn't telling! hahahahahaha
Here the baby's arm is over the head...
Here the baby is looking right at the "camera" in the lower one the baby opened his/her mouth and the gray area in the mouth is the little tongue!
Profile of the baby
Isn't life a miracle! This baby weighs only 12 ounces and yet has all the fingers and toes, has a little tongue, a beating heart, etc. It is amazing! It was neat to see the Baby moving it's little feet and wiggling around. So wonderful!! I love babies!
The bad news is our doctor is no longer doing OB as of Jan 1 and the 4 doctors who took over his practice don't go to Lehigh where I want to deliver. :-( The hospital they use is even a little further and you would have to go through Allentown traffic to get there. Plus, Lehigh has a level 3 NICU St Luke's has a level 2 NICU.
So we can find another doctor and still use Lehigh or find another doctor and decide if there is another hospital closer to us that we want to use. Please pray for special wisdom in making these decisions - as you know... who you go with can make a HUGE difference... a life and death difference!
Wednesday, December 23, 2009
Felt the Baby move!!
Tonight I felt the Baby move for the first time...well first time that I am sure of at least. I felt two strong kicks (flips, punches, whatever). And then a little later I felt it again!
I'm so excited! I can't wait to meet this new little one in May sometime! :o)
I'm so excited! I can't wait to meet this new little one in May sometime! :o)
Saturday, December 19, 2009
JayDonn's first snow storm!
Our house Friday Night before the snow. We are the one wtih the candles in the window. Josiah is the one who made that tree look so beautiful!
Our house Saturday night after the snow - and I think it is still snowing!
Daddy and Dillon staying warm inside.
JayDonn getting ready for his first time out in a snow storm.
Some "Little angels" brought him this snow suit on Thursday! Thank you so much! It fits him perfectly and the timing couldn't have been any better!
He didn't like the little sled too much :-(
Daddy and JayDonn freezing in the snow!
The down side is that Dillon's nurse called off for tonight and of course no one will replace her. So please pray that Dillon will sleep good. I just found out they are not having service tomorrow morning at church so that is good since we were to be at the 8:15 service so Josiah could serve on video crew. Josiah was just out removing some of the snow from our side walk and in that short time another 1/2 inch fell so it is good people aren't going to be risking their lives out on the roads tomorrow morning. I am sure most people will do what we are planning and worship God at home as a family!
Enjoy the snow - stay warm - and be safe!!
Monday, December 14, 2009
From the mouth of Jay
Cute story I wanted to share with you:
The other day in the van Jay told me "I go to Heaven." So I asked him, "How can Jay go to Heaven?" and he answered me... "Jesus died for JayDonn." If you ask him if He died for Mommy he says no, if you ask him if He died for Daddy he says no and answers "Jesus died for JayDonn!" Apparently he thinks Jesus died for ONLY JayDonn.. heehee at least he is learning and is tender to the fact that Jesus loves him and died for him.
The other day in the van Jay told me "I go to Heaven." So I asked him, "How can Jay go to Heaven?" and he answered me... "Jesus died for JayDonn." If you ask him if He died for Mommy he says no, if you ask him if He died for Daddy he says no and answers "Jesus died for JayDonn!" Apparently he thinks Jesus died for ONLY JayDonn.. heehee at least he is learning and is tender to the fact that Jesus loves him and died for him.
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