Over the past few months we've been anticipating the IEP process for Brianna, Aleksa, and Wesley. Anticipating it may not be the right words... maybe dreading! :)
I now am no longer dreading the unknown, because I feel much better about KNOWING, yet, we still know it will be a very long day tomorrow. I believe that there will be at least 12 people at the meeting representing 3 different schools. Michael and I will be there as well with our advocates.
If you think of us around 1:30 Eastern time, say some prayers for us! We want what's best for Brianna. I hope that the other 12 people around the table do too! THANKS!
The Cornish Family... Chasing God's calling...
Wednesday, May 04, 2011
Oh my
Legally, the best way to disqualify a child from being able to go to an inclusive classroom is to write the IEP in a way that it cannot be reasonably executed in an inclusive environment. Include the words "very small group" (meaning 1:3 ratio) a lot. That justifies a self-contained classroom.
In case you were wondering...
In case you were wondering...
Tuesday, May 03, 2011
Waiting...
MRI scheduled for 1pm. 45 min later waiting to be called back. I think we have convinced anesthesia to do gas before the IV. I hope...
Mom's heart cath
This morning my mom had a heart cath done. All went well and thankfully her heart is good! More will be emailed to family I'm sure...
Monday, May 02, 2011
Sunday, May 01, 2011
Brianna's PreK Videos
Brianna's doing so good with her letters and colors, I recorded her using the StarFall app on the iPad and identifying her letters, then in our bathroom with the towels and washcloths telling me colors. They're a bit quiet (it was nap time!) but she's very articulate with her colors and letters. She does make a few mistakes, but we're so proud of her!
Here's the colors...
and her letters...
Here's the colors...
and her letters...
Saturday, April 30, 2011
Friday, April 29, 2011
Thursday, April 28, 2011
ring around the rosy...
With a little *blip* where the power goes out and the hole in the neighbor's lawn was created...
If you needed a smile tonight, I hope this will do it! Aside from the singing anyway lol
If you needed a smile tonight, I hope this will do it! Aside from the singing anyway lol
Yikes!
This is across the street and down one house. It's a 15 foot hole from a direct lightening strike! Needless to say we lost power on and off for a bit, but everyone's fine and the fire is out now.
We also lost a few electronic devices, namely our router for true internet and our phone line. We also lost our computer which works as a server. Not sure what else may be damaged at the moment. The little test box things in our bathroom tripped as well. Pretty wild for a storm that lasted all of 20 minutes!
Hail, lightening, yes, its about to be summer time!
Wednesday, April 27, 2011
Did you know...
That when using gmail, any new recipients added on to the email since you last replied are bolded and put first on the list?
I think that's pretty darn handy. Helped me today when emailing with school folks, but by the time the 5th email was exchanged I'm pretty sure half the county was in on it :).
I didn't know that it did that until today but it was very helpful to recognize that new names kept being included along the email train!
I am ready for next FRIDAY when this IEP is behind us. Then... we have 2 more to get done before the end of the year...
(trying hard not to pray for patience...)
I think that's pretty darn handy. Helped me today when emailing with school folks, but by the time the 5th email was exchanged I'm pretty sure half the county was in on it :).
I didn't know that it did that until today but it was very helpful to recognize that new names kept being included along the email train!
I am ready for next FRIDAY when this IEP is behind us. Then... we have 2 more to get done before the end of the year...
(trying hard not to pray for patience...)
Tuesday, April 26, 2011
Crash Study Course!
Today has been a morning crash course re-educating myself on inclusive education, pertinent laws, rights of the child, entitlement even (wow, that's a big word, isn't it?), times when inclusion is NOT appropriate, and in general.... all things inclusion.
I've also done quite a bit of reading-up on homebound services, qualifications, and part-time public school attendance.
I wouldn't say I'm sharpening the claws, because I really want for all of the upcoming meetings to be successful and peaceful for the KIDS. But I am definitely making myself more knowledgeable so that I can go in with an informed opinion and suggestion for educating each of my kids.
I've spent the last two hours pouring over the Wright's Law site and several hours last week Googling laws including the bylaws for our area. Quite a bit of info out there!!
Off to a good start. Michael has no idea that he's about to get the "condensed crash course" in the next few days... you know, the one where I sit and read him everything highlighted on all the paperwork that I printed out so he can be just as loud, er... educated... a voice in the meetings as well. (( Sorry honey... :) ))
Brianna's IEP meeting is next week on Thursday. Here's a question for you if you have a child with an IEP or help in creating IEPs... Do you generally receive a copy of relevant material before the IEP meeting or do you just sit down at the meeting and have it all shared at the meeting? Also (hmm, guess I have a few questions...) have parents generally gotten a copy of the evaluations and testing used at the meetings? At the very least, the results which are being presented? Ahead of time? And last... I think... do you generally discuss suggested placements before the meeting so both parties can be knowledgeable about what the other has in mind?
We generally sit down at the meeting without prior knowledge of anything, BUT, we generally all agree on what's being done. When there have been difficulties that an IEP meeting was called to 'fix', they have been stated up front and our intentions as well as the school's were well known before the meeting. Right now, we've talked to the people that we are working with, but not with anyone that is actually coming up with their own plan or determination of placement for THREE of our kids. All three will have new placements for next year. For Wesley and Aleksa I haven't even mentioned our desire for part time homebound because I've not met with anyone that would have the ability to do anything with that... Hmm...
Thanks for your input! :)
I've also done quite a bit of reading-up on homebound services, qualifications, and part-time public school attendance.
I wouldn't say I'm sharpening the claws, because I really want for all of the upcoming meetings to be successful and peaceful for the KIDS. But I am definitely making myself more knowledgeable so that I can go in with an informed opinion and suggestion for educating each of my kids.
I've spent the last two hours pouring over the Wright's Law site and several hours last week Googling laws including the bylaws for our area. Quite a bit of info out there!!
Off to a good start. Michael has no idea that he's about to get the "condensed crash course" in the next few days... you know, the one where I sit and read him everything highlighted on all the paperwork that I printed out so he can be just as loud, er... educated... a voice in the meetings as well. (( Sorry honey... :) ))
Brianna's IEP meeting is next week on Thursday. Here's a question for you if you have a child with an IEP or help in creating IEPs... Do you generally receive a copy of relevant material before the IEP meeting or do you just sit down at the meeting and have it all shared at the meeting? Also (hmm, guess I have a few questions...) have parents generally gotten a copy of the evaluations and testing used at the meetings? At the very least, the results which are being presented? Ahead of time? And last... I think... do you generally discuss suggested placements before the meeting so both parties can be knowledgeable about what the other has in mind?
We generally sit down at the meeting without prior knowledge of anything, BUT, we generally all agree on what's being done. When there have been difficulties that an IEP meeting was called to 'fix', they have been stated up front and our intentions as well as the school's were well known before the meeting. Right now, we've talked to the people that we are working with, but not with anyone that is actually coming up with their own plan or determination of placement for THREE of our kids. All three will have new placements for next year. For Wesley and Aleksa I haven't even mentioned our desire for part time homebound because I've not met with anyone that would have the ability to do anything with that... Hmm...
Thanks for your input! :)
Sunday, April 24, 2011
Friday, April 22, 2011
Good Friday
Today is the day we remember the death and burial of Jesus Christ. His sacrifice on the cross. His crucifixion and the piercing of his side.
Today I remember that He did for me. And if there was only ONE soul to be saved through His death, even if it was just me... He would have died anyway. For even just ONE His gift was worthwhile, but He came to forgive ALL sins. If we just believe that He did this all for us. That he was born of a virgin, died on a cross to bear our sins, and was resurrected to new life. Because He lives, we have the hope of a future in Heaven. Death holds no chains, there is life EVERLASTING!
John 11:25-26
Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. (NIV)
Romans 1:4-5
And Jesus Christ our Lord was shown to be the Son of God when God powerfully raised him from the dead by means of the Holy Spirit. Through Christ, God has given us the privilege and authority to tell Gentiles everywhere what God has done for them, so that they will believe and obey him, bringing glory to his name. (NLT)
Romans 6:8-11
Now if we died with Christ, we believe that we will also live with him. For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. The death he died, he died to sin once for all; but the life he lives, he lives to God. In the same way, count yourselves dead to sin but alive to God in Christ Jesus. (NIV)
Philippians 3:10-12
I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead. Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. (NIV)
1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given usnew birth into a living hope through the resurrection of Jesus Christ from the dead... (NIV)
Matthew 27:50-53
And when Jesus had cried out again in a loud voice, he gave up his spirit. At that moment the curtain of the temple was torn in two from top to bottom. The earth shook and the rocks split. The tombs broke open and the bodies of many holy people who had died were raised to life. They came out of the tombs, and after Jesus' resurrection they went into the holy city and appeared to many people.(NIV)
Matthew 28:1-10
After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.
The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."
So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me." (NIV)
Mark 16:1-8
When the Sabbath was over, Mary Magdalene, Mary the mother of James, and Salome bought spices so that they might go to anoint Jesus' body. Very early on the first day of the week, just after sunrise, they were on their way to the tomb and they asked each other, "Who will roll the stone away from the entrance of the tomb?"
But when they looked up, they saw that the stone, which was very large, had been rolled away. As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed.
"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him. But go, tell his disciples and Peter, 'He is going ahead of you into Galilee. There you will see him, just as he told you.' "
Trembling and bewildered, the women went out and fled from the tomb. They said nothing to anyone, because they were afraid. (NIV)
Today I remember that He did for me. And if there was only ONE soul to be saved through His death, even if it was just me... He would have died anyway. For even just ONE His gift was worthwhile, but He came to forgive ALL sins. If we just believe that He did this all for us. That he was born of a virgin, died on a cross to bear our sins, and was resurrected to new life. Because He lives, we have the hope of a future in Heaven. Death holds no chains, there is life EVERLASTING!
John 11:25-26
Jesus said to her, "I am the resurrection and the life. He who believes in me will live, even though he dies; and whoever lives and believes in me will never die. (NIV)
Romans 1:4-5
And Jesus Christ our Lord was shown to be the Son of God when God powerfully raised him from the dead by means of the Holy Spirit. Through Christ, God has given us the privilege and authority to tell Gentiles everywhere what God has done for them, so that they will believe and obey him, bringing glory to his name. (NLT)
Romans 6:8-11
Now if we died with Christ, we believe that we will also live with him. For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him. The death he died, he died to sin once for all; but the life he lives, he lives to God. In the same way, count yourselves dead to sin but alive to God in Christ Jesus. (NIV)
Philippians 3:10-12
I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead. Not that I have already obtained all this, or have already been made perfect, but I press on to take hold of that for which Christ Jesus took hold of me. (NIV)
1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given usnew birth into a living hope through the resurrection of Jesus Christ from the dead... (NIV)
Matthew 27:50-53
And when Jesus had cried out again in a loud voice, he gave up his spirit. At that moment the curtain of the temple was torn in two from top to bottom. The earth shook and the rocks split. The tombs broke open and the bodies of many holy people who had died were raised to life. They came out of the tombs, and after Jesus' resurrection they went into the holy city and appeared to many people.(NIV)
Matthew 28:1-10
After the Sabbath, at dawn on the first day of the week, Mary Magdalene and the other Mary went to look at the tomb. There was a violent earthquake, for an angel of the Lord came down from heaven and, going to the tomb, rolled back the stone and sat on it. His appearance was like lightning, and his clothes were white as snow. The guards were so afraid of him that they shook and became like dead men.
The angel said to the women, "Do not be afraid, for I know that you are looking for Jesus, who was crucified. He is not here; he has risen, just as he said. Come and see the place where he lay. Then go quickly and tell his disciples: 'He has risen from the dead and is going ahead of you into Galilee. There you will see him.' Now I have told you."
So the women hurried away from the tomb, afraid yet filled with joy, and ran to tell his disciples. Suddenly Jesus met them. "Greetings," he said. They came to him, clasped his feet and worshiped him. Then Jesus said to them, "Do not be afraid. Go and tell my brothers to go to Galilee; there they will see me." (NIV)
Mark 16:1-8
When the Sabbath was over, Mary Magdalene, Mary the mother of James, and Salome bought spices so that they might go to anoint Jesus' body. Very early on the first day of the week, just after sunrise, they were on their way to the tomb and they asked each other, "Who will roll the stone away from the entrance of the tomb?"
But when they looked up, they saw that the stone, which was very large, had been rolled away. As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed.
"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here. See the place where they laid him. But go, tell his disciples and Peter, 'He is going ahead of you into Galilee. There you will see him, just as he told you.' "
Trembling and bewildered, the women went out and fled from the tomb. They said nothing to anyone, because they were afraid. (NIV)
Thursday, April 21, 2011
Adorable!
Brianna, James, and Micah made these at school, aren't they adorable? They're made from milk gallons and even James was able to carry his in. What a cute idea!
That feeling
Sometimes you look at a child and think this kid isn't cute. They don't listen. They do things behind my back. They disobey rules that I'm sure they understand. They don't love me. They don't know me from some stranger at the Wal Mart optical center. They wouldn't care if they never saw me again, and, in fact, are probably expecting just that. They have no attachments to anyone in this world. They go from person to person winning them over with their smile and desire to be held then turning around and doing everything they can to manipulate that person right under their nose. This just isn't fun. What are we doing?
Then, in other times of pure joy, you have a moment. You get "that feeling." You think how could I not love this child that doesn't really know how to love? How can I ignore that this child had no life, no training, no love, no unconditional anything until a few months ago. How can I place blame or dislike a little person that smiles and has no idea that the first eight years of their life in a situation which taught them nothing about social graces, boundaries, love, affection... not to mention anything academic or educational in the least. And the smile changes your mind.
And your icy heart melts.
And you unclench your jaw.
And you take a deep breath.
And you hug the little one that came to sit by your side, on their terms, to get the attention that they crave yet they don't understand.
And you see the surface smile, but look deeper. You see the trust beginning to develop. The attachment beginning to form. You see the little person that doesn't understand why their life was turned upside down and who is happy in spite of it.
And you know what? You feel love. That unconditional kind that only a parent can really understand. The kind that loves and hugs and forgives even when a child just peed all over a new couch or threw their dinner plate on the floor or stole someone else's dinner or threw every toy out the window when you weren't looking or tackled their sister instead of hugging her or waited for you to disappear around the corner to steal toys that someone else is using. The momma love that overlooks the breath that doesn't ever appear to get better and the general body scent that hasn't yet gone away after the orphanage. The love that says I love you no matter what.
Know what else? Our Heavenly Father does it so much better, and so much more for us every day. He loves us despite our inability to show Him the love He deserves. Despite our mistakes. Despite our intentional things we do wrong. He loves us even though he knows we know the rules, and yet we break them. He can look into our very hearts and souls and see that little spark in there that really does love Him. The part that really wants to get to know him. And even when we've yelled at our kids or gotten upset over nothing with our husband... when we haven't done the dishes and instead turned on the computer to browse the internet... when we skipped over our quiet time and slept an extra 30 minutes and when we walk around knowing what He desires for us and we ignore it at the same time... He's still right there. That Papa love that doesn't stop loving.
Adoption isn't about doing what's good for us. It's about forever loving a child. And sometimes it is the best reminder ever that just like our new child who grins and disobeys and tries to get things to always go her way... I was once just as lost before I turned my life over to Christ. And now... I still fail. And He still loves me in spite of my bad breath and tangled hair :) Sins included, Jesus' love is unfailing.
I want to show that love, and I want to live in it every day.
Then you sing a song. And you read a story. And you learn to love all over again...
Then, in other times of pure joy, you have a moment. You get "that feeling." You think how could I not love this child that doesn't really know how to love? How can I ignore that this child had no life, no training, no love, no unconditional anything until a few months ago. How can I place blame or dislike a little person that smiles and has no idea that the first eight years of their life in a situation which taught them nothing about social graces, boundaries, love, affection... not to mention anything academic or educational in the least. And the smile changes your mind.
And your icy heart melts.
And you unclench your jaw.
And you take a deep breath.
And you hug the little one that came to sit by your side, on their terms, to get the attention that they crave yet they don't understand.
And you see the surface smile, but look deeper. You see the trust beginning to develop. The attachment beginning to form. You see the little person that doesn't understand why their life was turned upside down and who is happy in spite of it.
And you know what? You feel love. That unconditional kind that only a parent can really understand. The kind that loves and hugs and forgives even when a child just peed all over a new couch or threw their dinner plate on the floor or stole someone else's dinner or threw every toy out the window when you weren't looking or tackled their sister instead of hugging her or waited for you to disappear around the corner to steal toys that someone else is using. The momma love that overlooks the breath that doesn't ever appear to get better and the general body scent that hasn't yet gone away after the orphanage. The love that says I love you no matter what.
Know what else? Our Heavenly Father does it so much better, and so much more for us every day. He loves us despite our inability to show Him the love He deserves. Despite our mistakes. Despite our intentional things we do wrong. He loves us even though he knows we know the rules, and yet we break them. He can look into our very hearts and souls and see that little spark in there that really does love Him. The part that really wants to get to know him. And even when we've yelled at our kids or gotten upset over nothing with our husband... when we haven't done the dishes and instead turned on the computer to browse the internet... when we skipped over our quiet time and slept an extra 30 minutes and when we walk around knowing what He desires for us and we ignore it at the same time... He's still right there. That Papa love that doesn't stop loving.
Adoption isn't about doing what's good for us. It's about forever loving a child. And sometimes it is the best reminder ever that just like our new child who grins and disobeys and tries to get things to always go her way... I was once just as lost before I turned my life over to Christ. And now... I still fail. And He still loves me in spite of my bad breath and tangled hair :) Sins included, Jesus' love is unfailing.
I want to show that love, and I want to live in it every day.
Then you sing a song. And you read a story. And you learn to love all over again...
Wednesday, April 20, 2011
Want to race??
Back in September when we first learned about Aleksa a friend and former student of mine approached us with a fundraising idea. April wanted to do a 5k to help us raise funds for Aleksa's potential adoption! Unfortunately, timing didn't work out to do it before the adoption, and the race was scheduled for April 30th :). Fortunately, God provided our funding in other ways, but this race is still on April's heart, so the vision stayed the same but the financial side has changed :). April's heart is for orphan care and for kids with Down syndrome. She has a HUGE heart and I'm so glad to call her a friend! Did I mention that April is 18 and has a 5 year old (adorable!!) sister with Ds too?
Well, this race is now going to be a fundraiser for both our family AND another family that I consider great friends. The BEDFORDS! Yes, that would be Shelley and Robert who have 3 bio little ones as well as 3 adopted boys w/ Ds and they are adopting... a girl! Their daughter will hopefully be coming home this summer!
We gratefully accepted April's offer to help with medical bills for Aleksa and Wesley, but we wanted to also make sure that the race was helping to bring home another child.
If you are local (or not local but want to come!), check out "Aleksa's Walk/Run 5k" at their blog, and register today!
www.aleksas5k.blogspot.com
Oh, and did I mention the race location?? It will be at April's family farm! All the runners get to pick a free pint of blueberries after the race. Come join us for a day of fun!! April 30th, registration online (links on the blog) and paypal payment available online.
Well, this race is now going to be a fundraiser for both our family AND another family that I consider great friends. The BEDFORDS! Yes, that would be Shelley and Robert who have 3 bio little ones as well as 3 adopted boys w/ Ds and they are adopting... a girl! Their daughter will hopefully be coming home this summer!
We gratefully accepted April's offer to help with medical bills for Aleksa and Wesley, but we wanted to also make sure that the race was helping to bring home another child.
If you are local (or not local but want to come!), check out "Aleksa's Walk/Run 5k" at their blog, and register today!
www.aleksas5k.blogspot.com
Oh, and did I mention the race location?? It will be at April's family farm! All the runners get to pick a free pint of blueberries after the race. Come join us for a day of fun!! April 30th, registration online (links on the blog) and paypal payment available online.
Another day...
Today's EEG went good, I think. I have no idea of results, but the actual testing went fine.
I also managed to stay awake all the way to and from Orlando for the test, and we made it through the evening as well! Two grandmas came for the day with the other kids, and even let me take a nap when we got home.
Tomorrow I don't think we have any appointments, just a friend coming to play with the kids in the morning and I will work on a few errands around the house :)
I also managed to stay awake all the way to and from Orlando for the test, and we made it through the evening as well! Two grandmas came for the day with the other kids, and even let me take a nap when we got home.
Tomorrow I don't think we have any appointments, just a friend coming to play with the kids in the morning and I will work on a few errands around the house :)
Lots of blood
This morning it was like an instant replay of the most difficult hour of bringing the kids home from Ukraine.
I don't actually know if I wrote about this when it happened because so much all happened at once, so I will tell the story again... When we got on the plane in DC on our way home from Ukraine, we sat down, buckled in, and waited for them to close the doors and taxi out to the runway. Before the doors were even closed, Wesley's nose began bleeding profusely!
I had towels and bibs with me for the kids to use when drinking and quickly tipped him forward, holding him on my lap and compressed his nose. He didn't like the positioning or anything on his face and fought me the entire time. He screamed and bit the towels and bit me, but if I removed the rag the blood was literally spraying out of his nose and I had droplets all over my arm and leg and on the towel I had covering my lap. His cup, which he'd been drinking out of and was closely ready for take off, was co reed in spattered blood. It was gross.
And it was scary!
We had already had a very difficult time with the airline getting our seats together and Chris ended up having to ask someone to give up their seat for her even after boarding the plane so that she could sit across the aisle from the kids and myself. Not an ideal way to start a very sleep deprived last leg of the 24 hour venture home with children we had only 10 days of history with!
After about 15 or 20 minutes the bleeding stopped, but not until after I was reduced to tears and the flight attendants had taken mercy on me and based both on his size and the fact that he was screaming uncontrollably, they ignored the fact that he wasn't sitting upright or buckled in when the plane took off.
I had so many things going through my head at that time, like what if this is something more than a nosebleed, what if the airplane pressure makes it worse, what if he is in pain once we take off and screams the entire flight because it hurts... What if he is actually sick and we just don't know it yet or what if he has these regularly?
The biggest one was wondering whether we were going to be kicked off the plane! When we were trying to refigure our seats, the very very unkind airline workers at the desk before boarding told me in no uncertain terms that they had way overbooked the flight. She told us that she had no intention of trying to get my kids' seats near mine or Chris's and if that meant we wouldn't be flying, then there were plenty of other people waiting for our seats and she would just bump us...
A man who to me was an angel had talked to us on our way through security and came over just to chat while we were waiting and asked if we had been able to change our seats to be together. I told him no and he asked for my tickets, that he would try again for us. Yes, I'd already been in tears at that time too... It doesn't take much lol, especially when I haven't slept! He disappeared with our plane tickets and I went to buy drinks so that the kids would have something for take off.
He came back and said that he flies to Europe twice a year for work and that he knows most of the staff well. He told them we we're his friends coming home with two newly adopted disabled children and that if we booked seats on this flight that she needed to make it a priority to get our seats together. Basically, he used his own clout for our benefit... And it worked. They called me over a few minutes later and had 3 of us together and Chris was able to trade with someone after boarding,
Back to the flight though, I was afraid that if someone saw he was bleeding that they would just tell us to get off the plane! We were only a few hours from home and unless I was read to go to the ER (which I wasn't... I have a little nursing experience aside from even 'just' the care of my kids and wasn't that terrified by a nosebleed...) then I wasn't voluntarily getting off the plane!
Well, we made it through take off and Wesley ended up falling asleep and sleeping through the entire flight, on my lap, never buckled... And he had a great drive home after landing...
Now on to today... Wesley was eating breakfast and his nose, once again, started bleeding profusely. At home I have ice packs, whereas we didn't on the plane, so we put him upright and forward, applied ice and compressed his nose and... Waited. About 15 minutes. Two rags. A lot of blood.
Then it stopped and he seems pretty ok. During that nice little episode with the bloody nose he went back in time behaviorally, too. He thrashed, screamed, bit the towel and threw his head around. It was just like the first time and just like several fits thereafter when he would do similar things. He hasn't had a fit like that in months and only tried to bite me once even at the hospital.
There's only one trigger that is a similarity, and it's a pretty obvious one to me, though I don't believe that in general these two things are related.
Both times, Wesley was severely sleep deprived.
Today is his EEG, so if theres anything too strange going on, maybe we will see that in the results of the morning... But otherwise we keep on keeping on until or unless so merging else happens, needing more of a response.
I will say, though, that it helped me to realize how different Wesley is today than he was 4 months ago when we first received custody of him. He has grown and matured in ways that I didn't even notice, just in the way that he deals with stress and situations that he doesn't like.
Now... Here we go... Off to start another day!
I don't actually know if I wrote about this when it happened because so much all happened at once, so I will tell the story again... When we got on the plane in DC on our way home from Ukraine, we sat down, buckled in, and waited for them to close the doors and taxi out to the runway. Before the doors were even closed, Wesley's nose began bleeding profusely!
I had towels and bibs with me for the kids to use when drinking and quickly tipped him forward, holding him on my lap and compressed his nose. He didn't like the positioning or anything on his face and fought me the entire time. He screamed and bit the towels and bit me, but if I removed the rag the blood was literally spraying out of his nose and I had droplets all over my arm and leg and on the towel I had covering my lap. His cup, which he'd been drinking out of and was closely ready for take off, was co reed in spattered blood. It was gross.
And it was scary!
We had already had a very difficult time with the airline getting our seats together and Chris ended up having to ask someone to give up their seat for her even after boarding the plane so that she could sit across the aisle from the kids and myself. Not an ideal way to start a very sleep deprived last leg of the 24 hour venture home with children we had only 10 days of history with!
After about 15 or 20 minutes the bleeding stopped, but not until after I was reduced to tears and the flight attendants had taken mercy on me and based both on his size and the fact that he was screaming uncontrollably, they ignored the fact that he wasn't sitting upright or buckled in when the plane took off.
I had so many things going through my head at that time, like what if this is something more than a nosebleed, what if the airplane pressure makes it worse, what if he is in pain once we take off and screams the entire flight because it hurts... What if he is actually sick and we just don't know it yet or what if he has these regularly?
The biggest one was wondering whether we were going to be kicked off the plane! When we were trying to refigure our seats, the very very unkind airline workers at the desk before boarding told me in no uncertain terms that they had way overbooked the flight. She told us that she had no intention of trying to get my kids' seats near mine or Chris's and if that meant we wouldn't be flying, then there were plenty of other people waiting for our seats and she would just bump us...
A man who to me was an angel had talked to us on our way through security and came over just to chat while we were waiting and asked if we had been able to change our seats to be together. I told him no and he asked for my tickets, that he would try again for us. Yes, I'd already been in tears at that time too... It doesn't take much lol, especially when I haven't slept! He disappeared with our plane tickets and I went to buy drinks so that the kids would have something for take off.
He came back and said that he flies to Europe twice a year for work and that he knows most of the staff well. He told them we we're his friends coming home with two newly adopted disabled children and that if we booked seats on this flight that she needed to make it a priority to get our seats together. Basically, he used his own clout for our benefit... And it worked. They called me over a few minutes later and had 3 of us together and Chris was able to trade with someone after boarding,
Back to the flight though, I was afraid that if someone saw he was bleeding that they would just tell us to get off the plane! We were only a few hours from home and unless I was read to go to the ER (which I wasn't... I have a little nursing experience aside from even 'just' the care of my kids and wasn't that terrified by a nosebleed...) then I wasn't voluntarily getting off the plane!
Well, we made it through take off and Wesley ended up falling asleep and sleeping through the entire flight, on my lap, never buckled... And he had a great drive home after landing...
Now on to today... Wesley was eating breakfast and his nose, once again, started bleeding profusely. At home I have ice packs, whereas we didn't on the plane, so we put him upright and forward, applied ice and compressed his nose and... Waited. About 15 minutes. Two rags. A lot of blood.
Then it stopped and he seems pretty ok. During that nice little episode with the bloody nose he went back in time behaviorally, too. He thrashed, screamed, bit the towel and threw his head around. It was just like the first time and just like several fits thereafter when he would do similar things. He hasn't had a fit like that in months and only tried to bite me once even at the hospital.
There's only one trigger that is a similarity, and it's a pretty obvious one to me, though I don't believe that in general these two things are related.
Both times, Wesley was severely sleep deprived.
Today is his EEG, so if theres anything too strange going on, maybe we will see that in the results of the morning... But otherwise we keep on keeping on until or unless so merging else happens, needing more of a response.
I will say, though, that it helped me to realize how different Wesley is today than he was 4 months ago when we first received custody of him. He has grown and matured in ways that I didn't even notice, just in the way that he deals with stress and situations that he doesn't like.
Now... Here we go... Off to start another day!
Sleep deprived
Of course we are sleep deprived on a semi regular basis whenever one of the kids is sick or gets into a hard waking schedule... But this is a whole different level of sleep deprivation! In two different ways, actually.
In general, we are having difficulty getting any good sleep because Wesley is needing to be repositioned about every 20-60 minutes all night long... No matter what position he starts in, after an hour max he wakes up stiff and crying. It's sad that he is so uncomfortable! And when he isn't uncomfortable and can be calmed with just a quiet word or hush, he is just in that wake cycle and won't go back to sleep without reassurance that we are right there. In other words, he's spoiled :).
Not much we can do to undo that right now since he sometimes really is needing attention... So we grin and bear it. We have been taking turns on who sleeps on the couch in the family room where we have moved his bed to and that person is on duty for a majority of the night unless they get to a point that they just can't do it and need to sleep more. The other of us sleeps in our room with the bathroom fan on and monitors off so they can sleep and not hear him fuss. For now it's working, but goodness... I'm tired!
In addition to that kind of sleep deprivation, tonight there's a second type going on. Wesley is allowed no more than four or five hours of sleep tonight in preparation for his EEG tomorrow mid morning. In order for that to happen, we had to keep him up late and will be waking him at the normal 6am. Yes... That means he just fell asleep about 30 minutes ago and yes, he's already woken up once to be repositioned...
We have had a bunch of doctor's appointments this last week or so and school appointments as well. Between that and my own sleep deprivation it's hard to find the time to write about it all... Except for at 2am when woken up by a sleepy crying little man!
In general, we are having difficulty getting any good sleep because Wesley is needing to be repositioned about every 20-60 minutes all night long... No matter what position he starts in, after an hour max he wakes up stiff and crying. It's sad that he is so uncomfortable! And when he isn't uncomfortable and can be calmed with just a quiet word or hush, he is just in that wake cycle and won't go back to sleep without reassurance that we are right there. In other words, he's spoiled :).
Not much we can do to undo that right now since he sometimes really is needing attention... So we grin and bear it. We have been taking turns on who sleeps on the couch in the family room where we have moved his bed to and that person is on duty for a majority of the night unless they get to a point that they just can't do it and need to sleep more. The other of us sleeps in our room with the bathroom fan on and monitors off so they can sleep and not hear him fuss. For now it's working, but goodness... I'm tired!
In addition to that kind of sleep deprivation, tonight there's a second type going on. Wesley is allowed no more than four or five hours of sleep tonight in preparation for his EEG tomorrow mid morning. In order for that to happen, we had to keep him up late and will be waking him at the normal 6am. Yes... That means he just fell asleep about 30 minutes ago and yes, he's already woken up once to be repositioned...
We have had a bunch of doctor's appointments this last week or so and school appointments as well. Between that and my own sleep deprivation it's hard to find the time to write about it all... Except for at 2am when woken up by a sleepy crying little man!
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