Saturday, April 30, 2011
Friday, April 29, 2011
Thursday, April 28, 2011
ring around the rosy...
If you needed a smile tonight, I hope this will do it! Aside from the singing anyway lol
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...
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!
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
Christ has risen, death holds no reign!
Have a blessed Easter!
Friday, April 22, 2011
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!
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)
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)
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)
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)
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)
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)
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
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!
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??
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!
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.
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
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!
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!
Saturday, April 16, 2011
Add to that the idea that several of our kids don't recognize the pesky itchy feeling of a bug biting them, and you have kids with five and six bites clustered together and a few of the kids who swell up pretty significAntly from those pesky bites.
After a ten minute car ride, both Micah and James ended up with bites on the back of their necks, and Wesley, while laying in his bed at the house, had two on his arm which swelled up significantly and required oral benadryl for a day...
So, anyone have a safe home remedy of bug spray that we can. Use on the kids on a daily basis which won't harm them in it's frequent use yet will save them from those nasty little critters?
I've done a little Internet research on it and came up with a few, but if someone out there has a tried and true version I'd be much happier trying that!
Friday, April 15, 2011
For the first time ever...
Thursday, April 14, 2011
Obstructive Sleep Apnea (OSA)
Respiratory Therapy came in to check his airways, etc, and with a gentle 'adjustment' of his chin, he no longer snored or seemed to be struggling to breathe (his trachea area was 'pulling' when he was breathing, showing distress-like symptoms).
I am definitely not well informed about OSA, and was hoping some of you may be :). It was recommended that we get a referral to ENT and have a sleep study done for him because he may need a cpap or bipap. I know what they are, I know that they are to treat OSA, but what I am more curious about is whether this could be ONLY a result of the surgery (recent intubation and heavy pain meds causing 'extra' relaxation).
The last few nights he's woken up many times during the night, yet doesn't appear to be in pain during the day for the most part. We have still given one or two doses of pain meds in the daytime (could be up to every 4 hours... but only 1 over 12 hours yesterday) but at night we've given it twice, and he's not even moving around, etc... he just wakes up in an inconsolable cry. Since he can't communicate, we go ahead and give him the pain meds *in case* that's what's bothering him. Within 20 minutes he usually calms down, but last night he was awake almost all night (even with pain meds) and fussing every 5-10 minutes until 4:30am when I finally just put him on my chest on the couch and he slept until 6am. Unfortunately, I didn't sleep even during that time, so well, because there was a boy in a heavy cast leaving indentations on my arm, chest, and leg from laying on top of me LOL.
And so, the question is... could he be waking from OSA? Could he have always snored an dus just not notice it? Could it be positioning since he used to sleep curled up on his side and now he is more on his back? He DOES sleep on his side some but always moves back to his back during the night, even with propping right now. Could it be just from surgery? Should we go ahead and seek an ENT referral and go through a sleep study or is there "something else" we should be looking at before putting him through that? Though I know it's painless, it's "just one more thing" for him, since he has an EEG (rescheduled from TODAY since he's still on pain meds) and sedated MRI coming up already and just had surgery...
Thoughts? I WANT him to breathe well! I just don't want to jump the gun and put him through a lot if this could all be circumstantial. I will, of course, talk to the pediatrician about this all and probably mention it to our ENT next time I'm in even if we don't go that route... but thought I'd ask the "experts" too (YOU!). Thanks!
Free ABA iPad apps for the month of April
You don't have to have a child with special needs or autism, they are free for anyone :)
I've only had a minute to play with them, but I'm counting on getting some good use out of them at the cardiologist office today when 3 of the kids are being seen!
Wednesday, April 13, 2011
Yet I keep going back to the 180 school day requirement and I know that this is obviously not something that's commonplace around here (nor is adopting institutionalized disabled children... unless our 4 count and one more on the other end of town...). I get the feeling that if it's not been done here before I should probably be able to back up whether it's legal and if it has worked for someone else in the past if I intend to bring it up as a possibility.
And so I ask... Would love to hear feedback if anyone has any. You know, helpful feed back... not the kind that we can't publish :). Or contact me off list at meredithcornish at gmail dot com. Please feel free to pass the word along that we're asking if you have friends or other communication networks where someone may have experienced this.
Where's Your Nose?
PS: this was filmed literally a few minutes before the "mama" video... but I saved this one (and admittedly had to figure out how to get it off my phone because it was too large to email to myself LOL)
Tuesday, April 12, 2011
An update on Aleksa!
Anyway, on to Aleksa!
Aleksa is really doing very well. She is also absolutely an 8 year old child that has spent her first 5 years in an orphanage and the last three years in a mental institution.
What do I mean by that?
I mean that she has been a challenge, and has faced challenges herself that are exactly what we were expecting to see... yet that doesn't make them any easier to face :).
What kind of challenges?
So glad you asked (ha!). The biggest challenge is still the lack of understanding and language, though that would be expected in most children with Ds adopted from a foreign country! Regardless of her previous life experiences, etc... She is beginning to pick up on things, though slower now than when she first came home. It's almost like she hit a "full" level and has to decide she can take in more pretty soon. Or maybe she's working on another skill that we just aren't aware of and language will start more readily after that's mastered. No idea!
In general, she is listening to directions when she understands what's being said, yet most of the time she's not understanding what's being said. After we've shown her or done hand over hand or... whatever, then she can immediately do it again. The next day? Notsomuch...
We are also meeting little "battles" with how to appropriately play with others. It is nowhere near as difficult for her to interact with the other kids as I'd feared it could be! That's a great thing! But she does walk up to anyone and just take their toy and walk away, leaving them crying. Or she'll shove them if they don't let go. Or, she's started to learn this one, she'll bring them whatever she's tired of playing with and hand it to them as she snatches their toy away. Better, but still not ok! :)
She has been VERY gentle with the other kids, and even her shove generally only knocks the other kids back a little or occasionally she'll make one of the boys fall down. But really it's not HARD, and I've yet to see her put a hand on Lynae at all. She's very gentle with the "baby Lala". Wesley too, she doesn't mess with his toys (learned that one quickly!).
Toileting-wise she is doing GREAT, only one accident recently except for at nap time where we've had several. Less drink at lunch tends to help that though! She did pee all over the place while we were at the doctor's office the other day and left a trail to the bathroom. That was a fun one... Otherwise she is no longer using urinating all over as a means to control a situation! YAY! :)
Aleksa is learning, with constant reminders, to eat appropriately without shoveling the food into her mouth and is beginning to even chew her food a little more... that's a big deal! She still looks into everyone else's bowls when she finishes and will try to steal their food, even after a serving of food larger than my own! She doesn't understand "full" and will finish a meal before I have a chance to sit down... even after waiting for a blessing! She can eat an entire bowl of food in about a minute flat...
She also is into sharing her empty food containers. Unfortunately, that means she wants to give her drink cup and bowl to Micah. Micah has to have thickened liquids and chokes on food... so if there's actually any little scrape or drop left (which right now there isn't, but maybe some time there would be...), it could be very dangerous.
We are also working on SPEAKING, and she IS saying a few things, mama, baby,hi, bye bye, yes... and that's about it. I wonder how her hearing is because she is not attempting to copy anything close to what we're saying unless we make her sit and stare at our faces (and then she usually gets aggravated LOL). She also took her glasses off and snapped the leg of them in half while I was gone with Wesley for his surgery, so she's not had her glasses on in almost a week (they are on order and I've requested the script so I can get a second 'cheapie' pair...).
Aleksa will look for a quiet place to be devious, and will look around to see if someone is watching before being mean or doing things she's not supposed to. That is probably the hardest thing to deal with, because it's when we're not there that it happens... And that makes it harder to help 'fix'. Thankfully, she doesn't have much unsupervised time, but she can sometimes find a spot in a room where she doesn't think she's being watched and begin either destroying something or trying to take someone's toy, etc.
And lastly... hmm, is it lastly? Well, we'll just say it is... Aleksa is copying all of the behaviors that she sees anyone else get in trouble for. We have been WILDLY praising her for doing GOOD things, NICE play, etc... but still she decides to go dangle a pen over the magna doodle, which is a habit of James' that we are trying to stop when he could be coloring instead and getting input that way. She also saw him sit on the magna doodle while doing this and we took him off it and put it on his lap, told him to play nice with it. Then she went and sat on one as well. She, too, got in trouble... James' glasses broke (welding came undone when he pulled them off) and he no longer has his glasses. This was while Mike was home and wasn't malicious. Aleksa saw all of this and the next day snapped the leg of her glasses in half. Grandma was here and even made her go bring her the other part of the glasses that she'd broken... and she knew exactly where it was.
So... it's been a challenge, but in the great scheme of things, she's still an 8 year old little girl who is learning what it means to be loved and we are learning what it means to be functional, but still severely neglected in an unhealthy environment for a child's entire lifetime. It's a totally different situation than we've had with any of our other children because she is, quite possibly, the "highest functioning" of our 4 adopted children with Ds (very hard to tell, since the boys are only 4, but obviously right NOW she is at a much higher cognitive and functioning level than they are). We haven't dealt with 8 years of neglect in any of our other kids. Five, six, yes... eight... nope. She's the first!
We are learning together. She's spending some time in time out. She's teaching us how to help her learn (by removing opportunities to mess up! LOL) and we are teaching her that we love her without exception and that includes teaching her and disciplining her. We want her to become the person God created her to be, and we are Praising Him that He allowed us to bring her into our home and to teach us all through her "integrating into a family and society" stages.
I realize this sounds very negative, but I hope that it's understood that that's simply because it's all listed out pretty matter of factly in one page. She's really doing great, and anyone "from the outside" of our home that spent just a few hours with me would probably say completely different things about her. She HAS adjusted well to family life in general and when being watched and "cut off early" on the things she tries to get away with, we have lots of great days with good listening and nice behavior! We just have to always be one step ahead of her to prevent her from getting into trouble as well as giving her opportunities to make GOOD decisions.
Each day she is growing and learning, and we continue to grow and learn with her! God is good, ALL the time! Even in the days of struggling with the behavior of a former orphan little girl who doesn't know what it means to be loved... and because of that, I want to love her even more :)
To answer the q s about my little incident... the iPad is fine, and my foot is walkable! Thank God! Just a well deserved bruise :). After all, who would put a laptop in top of a 4 foot tall dresser propped up to each Brothers & Sisters on Netflix while sorting laundry at nap time? Yeah, ok, me... :)
IPad meet foot...
It fell off a dresser while I was doing laundry and no, I didn't try to break its fall. I don't love the way my foot is throbbing right now and the pretty colors and swelling its doing now... *sigh*
Monday, April 11, 2011
Wesley's new trick!
Saturday, April 09, 2011
A good morning!
Last night my mom stayed into the evening and about 6ish she headed out after having helped with baths. About 7:30, once most of the kids were in bed, I laid down with a book (on the iPad) for just a minute. I didn't get back up for quite some time, and ended up going right to bed! I was exhausted!
Michael put Wesley down and he was able to sleep with minimal propping in is regular toddler bed. We weren't sure, based on the positioning of the cast, if that would really work. It did tho! I got up about 10pm to change his diaper since Mike isn't so sure about getting it all put back together right (the important part) quite yet.
Wesley slept all night, had a wet (but not saturated) diaper this morning, and joined us in bed at 6am. The rest of the crew slept for quite some time and we all got up about 7. Oh, wait, that would be Mike that got up at 7. Around 7:30 I realized he was awake and came out with a GIGGLING Wesley! He'd kicked the pillow out from between his legs (was propped on his side) and he is the one that woke me up :) So yes, I got almost 12 full hours of only slightly interrupted sleep! I heard someone crying at 3:30 am and came out to realize it was Lynae, so I went back to bed. She isn't supposed to be up at 3:30! (Someone commented on how mean it is that I go back to bed when I know it's Lynae-- I did check on her, but she is just in a wake cycle of getting up at 3:30 or 4am and since I figured out it wasn't Wesley- their cries sound similar- I did go back to sleep and she laid back down within 3 or 5 minutes and went back to sleep without help. Yes, we let her do that and she is learning to sleep through the night again after having had a cold previously and being up several times a night. Mike made the mistake of giving her a cup one day at about 3:30 and now she's pretty sure that should be the new routine. Call it mean, but she really is fine and went right back to sleep on her own! :) ).
Everyone had breakfast and I got Wesley situated then I sat down on the couch and... I was out cold for another hour! I had a seriously sleep-deprived week, and the beginnings of a major icky sinus thing which I can only guess is from the dry hospital air. I got all the kids dressed and by the time we had the kids play for a little bit, we went ahead and did lunch at their 'normal' time, around 11. Then most of the kids laid down for naps and of course I... fell asleep on the couch. I probably only slept about 20 minutes there before some of the kids woke me up playing. They were banished to the other end of the house so they didn't wake up the kids... ;) And I went back to my bed to go back to sleep after making sure Michael was awake and paying attention to the two that were awake :).
And yes, I went right back to sleep for probably another hour with only a brief interruption from a knock on the door.
That knock happened to be my parents, dropping off their mini van for us to use this next week. Since we have to have Wesley at the house when we go pick up kids from school this coming week, we needed a vehicle that more people were able to drive to use for pick up and drop off from school. We can't ask someone to drive our 15 passenger that isn't used to big vehicles, so my parents loaned us their Quest (which they are trying to sell! If anyone's interested...) that we can install 4 car seats and a booster seat into and pretty much anyone can drive it to help us pick the kids up. Normally we'd get "just anyone" (ha) to watch the kids here at the house, but with Wesley requiring more than just basic supervision it will likely be the 'helper' picking up kids rather than watching the 3 at the house. That's a big blessing to be able to use it for the next few weeks!
Now we're all up and at 'em and yes, I'm awake. Though if I sit still again I'm pretty sure I could fall right back asleep again! That's what about 5 days without sleep will do to a person :).
We are blessed to have friends from church bringing us supper tonight and are looking forward to getting to the grocery store and doing our taxes sometime in the next 24 hours... so long as I can stay awake!
And for those who asked, Brianna is FINE today, and never ran a fever yesterday. Our thought is she may have just overeaten and/or gotten a quick bug that she's over and done with. She let it go three times within about an hour and has been great ever since. WHEW. Here's hoping no one else starts in!!
Friday, April 08, 2011
The crew all together once again... the two pics of Brianna are the before throwing up her entire stomach contents... 3 times... and after. Sounds like that's the next adventure... how to keep the post op kid and the poking one separated and both happy and healthy again...
Working on settling in...
Thursday, April 07, 2011
Spoke too soon?
I thought we were just here for surgery??
Wesley's 102.7 temp earlier in the day was the turning point for him, and I only hoped we could go home today. We were pretty close, actually! We got the car harness, learned how to use it, signed off on all of that... We already have his wheelchair. He's off of the IV and has been pretty comfortable during the day with the oral meds. His temp even went down to 99 something after Tylenol and Motrin. Then, the ortho asked if we felt comfortable going home.
Let's see... we're taking home pain meds including Tylenol, and we have Motrin at the house. No issue with fever regulation as long as those are cutting it. He's not in super-pain from the surgery, for the most part, with the meds that he's on and we can, again, supplement Motrin as needed as well. He's 'junky' sounding, but that's not the end of the world. Lungs sound clear and Respiratory Therapy doesn't feel a breathing treatment will help at this time. IF he does need one, as determined later on by our pediatrician, we happen to have two nebulizers at our house. We even have Albuterol, Xoponex, and Pulmacort on hand and don't have to go to the pharmacy if he needs something 'immediately'. So as long as it's manageable, we're good.
We were given the go-ahead to go home!
Then, he came back in a few minutes later and said "on second thought, that was a high fever today. Better hang here and let's consult with the Hospitalists (general practice physicians) tonight. At least one more night and let's go from there.
Darn. So close...
So instead of worrying about hips and pain, we instead did a chest x-ray, a Strep swab, flu and RSV swabs, a blood culture, and he was cath'd but... with no urine result.
Fun stuff, right? After all... I thought we were just here for surgery??
A few results are in-- lungs show bilateral (something) effusion. Explained to me as liquid in the sac around the lungs. Needs to be watched and monitored to be sure it doesn't turn in to pneumonia. Nothing that can be helped by breathing treatments (still LOL). Strep is negative (WHEW). Just did the rest of the tests, and of course need to redo the urine attempt bc she either didn't get it into the bladder or he had no pee...
So, the search continues. The great hunt for the cause of the high fever. Next up, a second attempt at a urine cath for a culture and hopefully a few results. Of course not any time soon since this is a hospital.
Oh, and we have the same nurse as last night and we are hoping for the best :) She DID get his blood draw on the first try, and decided on her own to have someone else do the cath since she didn't get it the first time. Off to a better start... Let's go for optimism that we'll all have a good night!
Good morning sunshine
It would be a great day to go home.
If you didn't have a 102.7 fever... *sigh*
I mentioned he was warm and asked to take his temp at 630am. Again at 8 during shift change. At 930 the tech finally came in. Now it's 10 and the nurse just came in saying she asked for Motrin so we are waiting again.
My guess is that the low grade fevers we have seen the last two days have been low because the pain meds have kept it down. They have acetomenophen in them...
He is also really rattley in his chest so I doubt we are headed home today. :(
Just got more pain meds and will check in an hour if he needs Motrin too.
Last night was better. He still woke several times in pain and got morphine I believe twice... But those were to put off the oral meds so that he would have them at the right increments to be able to go home this afternoon.
The idea was to get the car harness this afternoon then go home around 1-2ish. Reality would be leaving the hospital at about 230-3.
Wednesday, April 06, 2011
Notice the number of pictures lately? Compliments of my new cell phone that will post to Blogger for me...
Hopefully there will be plenty more pictures as time goes on and I remember to use the camera on the phone so its easier to post...
As for this picture... well, it's Wesley in his cast, obviously... and of course not really happy...
But do you notice something odd...? Yes, it IS split all the way down the front. I wonder how that happened?
Ok well, now that you are curious, yes, I will tell you. When Wes came out of surgery he wasn't able to take deep breaths. In fact, the cast was so tight that you couldn't fit anything between his skin and the fast when he was breathing really shallow.
So... the surgical technician came in and split the cast allowing him room to expand his lungs.
And then, yes, there's more... and then we went upstairs and the first time we checked on his diaper we saw how tight it was on his bottom too. In fact, there was pressure not only.on his spine area, but his little cheeks were squashed too. The surgeon payedr us a visit to determine how much to cut away from the cast and the surgical tech worked his magic once more.
Poor kiddo... this is my child who hates public restrooms because of the noise of the flushing toilets. He did NOT love the casting saw!!
But this too shall pass. He's sleeping great right now!
A shout out to my "new friends" at APH 3rd floor....
For everyone else... Here's an update on Wesley...
He is having a better afternoon than he had yesterday or even this morning. Granted he has spent a lot of his time sleeping... It is SO much better than screaming, and I will take it. Praying it continues through the night and if he doesn't sleep that he is awake and happy... Ok, we will go for pleasant to be realistic :).
We are staying one more night as a collaborative decision between myself, our nurse, the doctor, and Michael. We are hoping that tomorrow we think "goodness, could have gone home!" rather than being at home thinking "oh no what have we done bringing him home already!?!?"
Wesley is still not tolerating the pain really great about 2 hours into a 4 hour pain med regimen...
As the previous pic showed, we have the wheelchair for him and we are meeting with someone to get us a harness for him to wear laying down on a bench seat in the car in leiu of a car seat.
Right now he is happily snoring after already having wet through his cast and two pillows just before his pain meds... Cath is out! Lol. Icky pee everywhere...
Oh, and still blood tinged urine in his earlier diaper but I believe thef most recent leakage was all clear, which is good!
Hoping to come home around 2 or so tomorrow...
Out for a walk
Wesley's loaner wheels... he liked the walk... or at least didn't hate it...
More on Wesley
Unfortunately, things didn't go as we hoped. The good thing is that he did ok with the anesthesia and they were able to do a muscle lengthening/tendon release in his groin muscles which will help with diapering and seating and maybe even supported sitting one day.
The not so good part is that they determined that his hips are so far degenerated that they are unable to be relocated, even with the intense process that they had planned to do with breaking the femur and restructuring the hip joint.
It absolutely breaks my heart that the surgeon said to us "it's just a matter of getting to him too late. Had we done this when he was 3 there would be no issue recreating the joint."
For Wesley's future this means that he will never walk and due to how far out there hips are and how far up they are from the sockets, he likely will not bear weight , especially as he gets bigger.
Despite the fact that the loss of activities means a lot for his lifestyle and, I won't pretend it doesn't matter... Ours too... The kicker which has me is that as he grows he will experience pain from the hips based on the way they are right now. The doctor's solution is that we "treat the pain as it comes".
I am immensely sad for Wesley and my prayer is that we will be able to learn his cues for pain and he be able to better communicate with us so that the pain doesn't go untreated...
As for right now, Wesley is in a half spica body cast down to his knees and up to his chest. He has to be transported laying down in our vehicle which not only will he hate, but it means we are a two car family and will have to lean on the support of others to get our kids to and from school since we can't put all our kids into one car for the next 3-4 weeks.
And even more immediately, he had blood in his urine all night but it appears to be clearing up. No idea why that was... He is still on major pain meds and if he is awake he is crying and his heart rate is going over 180 pretty much every time anyone walks in the room or touches him. He is also still on 1.5 liters of oxygen... So coming home today (original plan when they did only the soft tissue surgery and not hip reconstruction) doesn't look like it's a possibility.... Been a long 24 hours and we really appreciate your prayers!
Tuesday, April 05, 2011
Finally comfy again. Yay for valium... gonna be an interesting night..
Not a happy camper.
Finally drifting off to sleep after 3 doses of pain meds and 90 minutes of crying...
No hip relocation...
Wesley did have surgery today... but...
They did the tendon release but his hips can't be fixed. Out of surgery now and in a half spica. He did well! More info later. This isn't what we hoped for but it is what it is. Thanks for continuing to keep him and our family in your prayers as he would have 3-4 weeks in the Spica cast even without the hips being fixed...
Monday, April 04, 2011
We're going in to the day with the knowledge that God sees what we do not, and He knows what we do not know. He sees the days ahead and He plans out our footsteps... even if they feel like footfalls at the time.
Tomorrow's surgery may be cancelled if Wesley's temp goes up again.
It could be done "halfway" if it's too long of a process to do both hips at the same time.
It could be started, and found to be that his hips and sockets are simply incompatible.
There are all kinds of scenarios, but the things that will come to pass will do so not as a result of the enemy's triumph, no matter the outcome, but of God's divine plan and guidance.
Please pray for Wesley, that if this surgery is supposed to happen tomorrow that it will! And that whatever 'level' of correction needs to be done will be. Pray that he does well with the initial separation if they don't allow parents to stay until he is sleeping. Pray that he does well with the anesthesia since he's never had any sedation before. Pray for the doctors, nurses, surgeons that will be with him throughout the day, that they will have a steady hand, an assured spirit, and a compassionate heart. Pray for the others that we will inevitably meet in the waiting rooms and for their children undergoing procedures as well. Pray for Wesley's pain management and the physical structure of the cast. Pray that he will have padding in "all the right places" and will be comfortable in it... since he can't tell us if there is uneven pressure anywhere. Pray that Wesley will turn to us for comfort and support and not turn away in anger and betrayal. Pray for our hearts to endure handing over our new son to a surgeon. Pray for us to comfort our son, and to be able to understand his discomforts to vocalize what he cannot. Pray for our parents, taking on the crew back home for the day, and for their teachers, dealing with kids out of routine for the week. Pray for Michael as he returns home and balances work and family the rest of this week and for his coworkers, that they may also understand that necessary balance.
Thank you for supporting us through this. Though I don't look forward to tomorrow, I DO look forward to a day in mid-may when Wesley's casts will be removed and he can begin the journey to standing... sitting... and who knows what else God may have planned from there on out.
I pray you have a blessed Tuesday, and I will update here as I find possible via my (unfortunately...) new cell phone. (RIP Motorola Backflip... you served me well...)
Wesley's surgery is scheduled to begin at 7:30am EST.
Saturday, April 02, 2011
Wesley's PreOp and the Spica (body) cast...
I also got a lot of my questions answered like what time to come, how long the surgery will last (about 4 hours), how long we may be in the hospital after (maybe 1 night, more likely 3-5 days), and of course more details about the actual procedure.
Here's what (I think... at least, to my current knowledge) they are planning to do...
Due to his really bad scissoring, Wesley's hips are both dislocated. This isn't a conscious thing he's doing, it's due to his adductor (groin) muscles being too tight- a result of his cerebral palsy.
First on the list is to 'release' or lengthen the adductors in his groin area. That will give him more movement in general in his legs, and it just may take care of our diapering troubles, where he pees out of absolutely EVERYTHING...
Next they will do a bilateral osteotomy. Again, my understanding, is that they will do this in stages depending on what the hip looks like once they get in there. They are hopeful that his hip socket may be well formed (but it is unlikely). In that case, they wouldn't have to break and reform the pelvis. If not, then they will. They also have to take a look at the femur and determine whether the angle of the head is compatible with the hip socket. If not, they will have to break and reshape that as well. Unfortunately, the success of the leg bones even drawing down into the pelvis and the possibility for relocation is another question mark and if that's not possible, they won't even begin the rest of that procedure.
When they finish one hip... they will see if they have time for the second... We are hoping and praying that the surgery will be as SIMPLE as possible, as PAIN FREE as possible, and that both of his hips will be able to be done in this ONE surgery! If they can't do both, then we will have to repeat the procedure for the other hip in 3-6 months...
As far as casting goes, Wesley will be in a fiberglass cast from just under his armpits, through the waist and down to his ankles. It's possible they'll stop it at the knee/calf, but likely will go all the way down to the ankles. The expectation is for him to be in the cast for about 6 weeks. Depending on how he heals, it could be longer, but not likely shorter.
Care of the cast, well, that appears to be the fun part :(. I've got some WONDERFUL friends who have been there before us that are wonderful and have shared their tips and info with me! The cast will have a 'cutout' at the diapering area so we can, of course, take care of his toileting... It's been suggested to me that we buy some size 2 diapers and some small adult diapers as well as some nighttime incontinence pads for adults. Put the pad inside the small diaper and tuck it up into the cast to 'catch' everything, then put the adult diaper on over the cast to keep the other diaper in place.
I've been warned-- several times-- that he WILL pee and poop IN the cast, that it's just inevitable... which sounds awful :( And that the smell is horrible no matter what... Doesn't this sound like fun :(??
Ok, so diapering won't be fun... but even LESS fun will be trying to keep him entertained and happy while having 3/4 of his body immobilized and of course in pain for a while...
The hospital will provide us a carseat or a 'harness' for use in the car. Not quite sure yet how that's going to work, because they said to use the carseat you have to have a reclining seat back (which a 15 passenger van does NOT), and the harness requires for him to lay down... which would require a bench seat... which we only have 2 seats available for (not three...). So, transporting our family all together may become a little more complex, but in general it will be fine. Just may have to bring two cars along for a while. Thankfully we usually have the ability to do that, so it will be ok! :)
Next question was wheelchair. Obviously, the wheelchair we have won't fit him when he's all casted. It is the PERFECT size for him right now! But that doesn't allow much room for a cast :). I'd heard from others that using a single jogging stroller is a good solution if a wheelchair isn't available, and I'm thankful that our doctor said that they will be loaning us a reclining wheelchair with a leg support. WHEW :). We also have moved Wesley's bed out to the family room to get him used to being in there before the surgery. He is waking up LAUGHING at night too, so it is helping the other boys sleep as well! LOL
He's done well, been there two nights and has three more before we're headed out for surgery so hopefully it will be familiar when he comes home to sleep there! That way if he's uncomfortable or needs help during the night we can camp out on the couch with him to take care of him without having to keep anyone else awake.
We also have a children's recliner that he uses and hopefully will be able to use with the cast on, and the end of our couch reclines and he likes to sit there as well. We have heard that an outdoor lounge chair will also work well (a soft one!).
So... lots of things we're learning!
One more thing... a 'cast cooler' was recommended to us by several people! It's basically something you hook your vacuum up to which pulls air up through the cast. It is a life saver in the summer months, I understand. http://www.castcooler.com/castcooler_works.html
I'm sure we'll be learning a lot more... but for now that's all off the top of my head. Dumping it all here helps me, helps Mike and any other folks that might be helping care for Wesley, and it also may help someone else in the future if they, too, are faced with spica casts and osteotomy surgery... So.. there it is!
Now for a dip in the POOL :) It's a beautiful Spring day!!
Friday, April 01, 2011
A Prayer for Children
Written By: Ina J. Hughs
"We pray for children
Who give us sticky kisses, who hop on rocks and chase butterflies,
Who stomp in puddles and ruin their math workbooks,
Who can never find their shoes.
And we pray for those
Who stare at photographers from behind barbed wire, who've never squeaked across the floor in new
Who've never ‘counted potatoes,' who are born in places we wouldn't be caught dead,
Who never go to the circus, who live in an X-rated world.
We pray for children
Who bring us fistfuls of dandelions and sing off key, who have goldfish funerals, build card-table
Who slurp their cereal on purpose, who put gum in their hair, put sugar in their milk,
Who spit toothpaste all over the sink, who hug us for no reason, who bless us each night.
And we pray for those
Who never get dessert, who watch their parents watch them die,
Who have no safe blanket to drag behind, who can not find any bread to steal,
Who don't have any rooms to clean up, whose pictures aren't on anybody's dresser,
Whose monsters are real.
We pray for those
Who spend all of their allowance before Tuesday, who throw tantrums in the grocery store, and pick
at their food,
Who like ghost stories, who shove dirty clothes under the bed,
And never rinse out the tub, who get quarters from the tooth fairy,
Who don't like to be kissed in front of the carpool, who squirm in church and scream on the phone,
Whose tears we sometimes laugh at, and whose smiles can make us cry.
And we pray for those
Whose nightmares come in the daytime, who will eat anything,
Who have never seen a dentist, who aren't spoiled by anybody,
Who go to bed hungry and cry themselves to sleep, who live and move, but have no being.We pray for children
Who want to be carried, and for those who must,
For those we never give up on, and for those who don't have a chance,
And we pray for those who will grab the hand of anybody kind enough to offer"
April is Child Abuse Prevention Month. Please Repost, Please Pray.
Sent to me by the Brevard Interfaith Coalition, a program of Catholic Charities and Florida Department of Children and Family Services