The Cornish Family... Chasing God's calling...
Monday, November 10, 2008
Christmas Ideas anyone?
I have a few ideas for Christmas but I'd love to hear what others can think of for our kiddos. We don't do a huge Christmas from Mike & I but that in addition to things from Grandma and Grandpa, Grandmommy and Grandaddy, and then of course a thing or two from Santa... it still ends up being a LOT. Then of course we have Brianna's birthday a week later, mine in the end of January, and Emma and Kristopher's are 5 days apart in February (E's birthday was my duedate with K, just a year earlier ;) ).
So... any thoughts?
So... any thoughts?
A blog award with a twist
Ok, so admittedly I'm very bad about posting things like this because they get lost in comments. I do love to receive them, as it's a small thing that is often a reminder that someone out in cyber world actually reads what I write. But this one comes with a fun story so it gets a post all its own! This award was given to me by Amy. Here's what she said:
This was a tough choice! There are sooo many great Mommy bloggers whose blogs I read, it was tough to pick one. But here goes! The person is Meredith . I have to say that I have NO IDEA how Meredith does all she does! Four kiddos under the age of 5 and 3 with special needs... if you need some inspiration, read her blog!
Thanks Amy! Now, this award was given to me a little while ago... In fact, it was on September 11th! (http://libenowfamily.blogspot.com/2008/09/blog-awards.html). I knew I'd received it when she posted a sweet comment on my most recent post, but then I couldn't find it again. I don't know why Blogger doesn't allow you to search comments (or maybe it does?) that would be a great feature!
So today I get a comment on my post from way back on 9/11 from a random anonymous person named Beverly simply saying "well said". Ok, I wasn't sure what I said so I clicked the post and up pops this comment saying I'd been given an award! LOL
Albeit a bit late (about, oh, 2 months!?), thank you, Amy, for the blog award! I'm honored by your kind words!
I love to read blogs in my "spare" time (yes, go ahead and laugh!) and though I have a lot that I check in on occasionally, there are just a few that I read every single day that I open my google reader.
Such a long winded response to say that I'm passing this award on after its two months in my comments to a special mommy that I recently had the privilege to meet. If you think my house is busy, I can only imagine hers! Shelley, I love reading your blog and I'm sure many of my readers do too! And if you don't post this for 2 months... or if you received it already 2 months ago... no worries :) You can still know that I love to read your blog!
I pulled out the old camera
And I found all kinds of pictures from a year ago! What a tiny little thing Brianna was! And Kristopher too! Here's a few... there were over 380 on the card! Of course it was full so I had to empty it in order to take any more pictures (and I probably have a few pic's on my dead camera too for that matter).
These probably aren't in order, as I'm sure the mess came BEFORE the bath :)
This hippo has since left our house. Its base was too wide for Brianna to figure out and it sat around for probably 2 years. Next time we'll get a thinner one at the leg area!
These were taken at Mike's parents' vacation spot last year when we went over to spend the day with them.
This is little AB who is now 18 months old and walking and running and SO ADORABLE STILL! I don't see her very often now but we still do keep in touch. And on the right is my friend M. She used to stay when I tutored her brother and she would play with Brianna and Kristopher. I think Brianna likes her, what do you think? We haven't seen M much lately either but need to invite her over to help me have a MOMMY day and so she can play with the kids sometime soon :)
I sold these sock monkeys with a Ds awareness ribbon on them as a fundraiser for our adoption. The next photos are our buddy walk last year!
Yep, you can say it, go ahead... aww..... :)
My dr's office call
Hi, thank you for calling, what can I do for you today.
Hi there, I have two things this morning, both for my daughter Emma.
Ok, let's do one at a time, what's the first?
I have a request from her PT for orthodics. I just need a script so I can have it filled.
I'm sorry she'll need to see the doctor for that.
No, we just need a script, please ask the doctor for just a script.
Ok, what else?
Wait, I need to tell you what the script needs to say.
The doctor will determine that.
Actually, the doctor needs the PT to determine that, so the PT told me exactly what it needs to say.
Ok... I guess I'll write it here and she can decide.
That's fine. It needs to say Bilateral Cascade DAFO 3.5
I'll leave a note.
All right, that's the first one. I have one more. I also need the orders for bloodwork for Emma as a followup from her last set. It is repeat of the ones we had done in Nashville probably. We just saw Dr. ___ and he said to get the orders from our regular doctor that is already familiar with what we need.
So you want an appointment to get bloodwork?
No, I don't want an appointment, I was just there last weekend. I just need the blood work orders as a follow up to the appointment. At my last apt I was told to call and get the bloodwork orders.
Ok, I'll put this up for Dr. ___
No, wait, it's not that doctor, it's for my regular doctor.
You said that Dr. ___ is who you just saw.
Yes, I saw him but he didn't know what needed to be run and said to call back for our regular doctor to do the bloodwork orders.
Ok, so I'm putting it up for your regular doctor then.
Thank you...
Don't you just LOVE new doctor's office employees? Most people there know my voice by now, my kids, and they knew the ropes of how things get done. They know better than to tell me twice in one conversation that I need to bring my kid in. No way! LOL I only bring her in when she NEEDS to be seen. That's quite often enough thank you!
We'll see whether I get the script and bloodwork... I will say though, at least the new person did agree to write everything down... even if she argued with me about it :) It's always nice to make new friends. It's a shame that this is how I do it though!
Hi there, I have two things this morning, both for my daughter Emma.
Ok, let's do one at a time, what's the first?
I have a request from her PT for orthodics. I just need a script so I can have it filled.
I'm sorry she'll need to see the doctor for that.
No, we just need a script, please ask the doctor for just a script.
Ok, what else?
Wait, I need to tell you what the script needs to say.
The doctor will determine that.
Actually, the doctor needs the PT to determine that, so the PT told me exactly what it needs to say.
Ok... I guess I'll write it here and she can decide.
That's fine. It needs to say Bilateral Cascade DAFO 3.5
I'll leave a note.
All right, that's the first one. I have one more. I also need the orders for bloodwork for Emma as a followup from her last set. It is repeat of the ones we had done in Nashville probably. We just saw Dr. ___ and he said to get the orders from our regular doctor that is already familiar with what we need.
So you want an appointment to get bloodwork?
No, I don't want an appointment, I was just there last weekend. I just need the blood work orders as a follow up to the appointment. At my last apt I was told to call and get the bloodwork orders.
Ok, I'll put this up for Dr. ___
No, wait, it's not that doctor, it's for my regular doctor.
You said that Dr. ___ is who you just saw.
Yes, I saw him but he didn't know what needed to be run and said to call back for our regular doctor to do the bloodwork orders.
Ok, so I'm putting it up for your regular doctor then.
Thank you...
Don't you just LOVE new doctor's office employees? Most people there know my voice by now, my kids, and they knew the ropes of how things get done. They know better than to tell me twice in one conversation that I need to bring my kid in. No way! LOL I only bring her in when she NEEDS to be seen. That's quite often enough thank you!
We'll see whether I get the script and bloodwork... I will say though, at least the new person did agree to write everything down... even if she argued with me about it :) It's always nice to make new friends. It's a shame that this is how I do it though!
Sunday, November 09, 2008
Update and another prayer request.
A quick update, I understand that the kids are doing well in their new homes. I had wanted to wait until I got the "family e-mail" with my parents' announcement so since I received that, I can share just a little more. I now have two "little foster brothers". T is 7 and D is 9. They are doing well with my parents and came by earlier to visit and meet Mike and I and the kids. My parents are not registered foster parents but knew the family so are a non-relative placement for the boys. Everyone's had a good weekend and they go back to school tomorrow. Please continue to pray for all involved in that situation.
Also, Mike's grandmother took a fall yesterday and landed on her shoulder, breaking it in several places. Last I heard she was in the ER still after a long wait and I'm not sure whether she was being admitted or released. Please pray for her and the family as she is about an hour away from everyone so there's a lot of people traveling to spend time with her.
Also, Mike's grandmother took a fall yesterday and landed on her shoulder, breaking it in several places. Last I heard she was in the ER still after a long wait and I'm not sure whether she was being admitted or released. Please pray for her and the family as she is about an hour away from everyone so there's a lot of people traveling to spend time with her.
A little here and there
I had great intentions of sitting down tonight when the kids went down at 7:45 and writing up some info from our visits to Hope Haven last week. I got caught up in a family's blog. Take a look if you'd like. http://blessedbyachild.blogspot.com They have 22 living at home right now and I loved seeing their family, their home, and their children. They adopted 5 children from Ukraine this summer including 3 siblings and 2 non-related children. They were in the same region we adopted from but a different city. Anyway, I spent a good long time looking through their blog and reading about their neat family... so here's a little bit tonight and then I'm off to get things ready for my crew for tomorrow.
Here are a few of the changes we've already begun to implement with Emma, Micah, and Brianna since our visit to Hope Haven.
Brianna and Micah- gross motor. I'll do these together since they are, strangely enough, needing similar things in this area since they really are close here! Micah is cruising and not yet standing or walking. Brianna is taking steps and walks across the room, etc. but is still not steady or walking on uneven ground or up and down inclines or steps.
Something that was suggested to us was putting couch cushions on the floor for Brianna to walk on, but our couches don't have removable cushions (one does but has a big cover that's a pain to take off!). We do, however, have an extra crib mattress which we'll put on the floor in the playroom. It will be great for Brianna to step up and down off of and to walk across with it being 'squishy' and help her self-correct. It will also help Micah to get up and down off of it and to do 2 hand assisted walking on it as well.
Another thing was climbing. Of course some kids you try to keep FROM climbing, but that's a gross motor task that the kids could use some encouragement on. In Brianna's school room they have a 'cube' slide which I believe she is able to navigate on her own now. I began looking for a used one (and will continue) but in the mean time we've come up with a temporary solution. Outside we have a swingset with 2 slides and a little bridge that connects them. We removed the smaller self-standing slide from the structure and washed it off really good. Mike drilled holes in the bottom of the plastic to drain out the water that had gotten inside and we're bringing that piece in to the playroom. Though it is still helpful outside, it will get a LOT more practice and use inside and there's still a larger slide and the BIG slide outside to play on (and swings!).
Crawling is another thing that will help Brianna specifically to build upper body strength. She's got the butt-scoot perfected and started crawling just before Christmas last year. She crawls more now that Micah is crawling but needs encouragement still. We bought a tunnel last year that we took out when we got the new kiddos home and have been encouraging Brianna to go through it on her hands and knees. We went to a garage sale before our last vacation and got some big square foam mats that go on the floor and cover 4 sq feet each. We lined them up on the end of the playroom and put our alphabet foam mats next to them. Now there's a soft place for the crawling tunnel and the slide to be together.
The big hammock swings from IKEA are also a great PT tool. They can swing and have to correct themselves some, but they can also spin in both directions which is another important thing to do to build up different muscles as well as (I'm sure I won't say this right) something like the way the brain takes in information. Not exactly sure there but I know it's good for them ;)
For Emma for PT there are several things that we'll begin doing. There are three biggies that will make a huge difference for her, I think. The first is the sheer fact that she'll be receiving PT services now. She started on Thursday and I'm very encouraged at how much she can do now versus only a few months ago. The second is knee immobilizers which will keep her knee in a slight bend so that her knees aren't hyperextended as she sleeps. We may also use them for weight bearing- I'm not sure quite yet.
The third is the MOST encouraging as I saw an immediate WOW when we used them at Hope Haven. On Monday I'll be calling our pediatrician for a script for AFO's for Emma. AFO stands for Ankle Foot Orthotic and is similar to the Sure Steps that Brianna wore until recently. This AFO is actually called DAFO (dynamic) and goes up the ankle to mid-calf (or at least the 'test' ones did). I put a pair of these on Emma at Hope Haven and though they were very big for her, the result was amazing. There's a hinge at the ankle and then the angle of the calf to foot was slightly bent. The PT was able to get Emma STANDING and completely WEIGHT BEARING! This was the first time that I've seen this without Emma hyperextending her knees!! Her knees hyperextend so badly that there's almost a 2" difference from where it should be to where her knee is. What a huge difference! I will try to get an appointment for later this week to fill the scripts for the DAFO's and the knee immobilizers. The knee immobilizers are mostly for when she's sleeping since Emma tends to let her legs rest on the rails of the crib and leave her knees hyperextended when she sleeps. OUCH.
I think that's the "big" PT stuff from our visit. More on the Speech, OT, and educational parts later as well as the medical eval for Emma.
If anyone's considering a trip to Hope Haven Down Syndrome Clinic or any other Ds clinic, I encourage you to go at least once and have an evaluation done. Especially if you've adopted your child with Ds and they're older with varying skill sets. I LOVE our local PT, Speech therapist, and OT but it is always great to have another opinion of skill sets. For me, with Emma not receiving any services until right now, Micah making huge gains in some areas (gross motor) and seemingly NONE in others (find motor/speech), it was great to have someone that's never seen the kids before take a rounded look at each area and make suggestions. It's probably not something that was super profound and yes, our local therapists might have suggested the same things, but getting all the info in one place for all 3 kids was a great thing for us right now!
Here are a few of the changes we've already begun to implement with Emma, Micah, and Brianna since our visit to Hope Haven.
Brianna and Micah- gross motor. I'll do these together since they are, strangely enough, needing similar things in this area since they really are close here! Micah is cruising and not yet standing or walking. Brianna is taking steps and walks across the room, etc. but is still not steady or walking on uneven ground or up and down inclines or steps.
Something that was suggested to us was putting couch cushions on the floor for Brianna to walk on, but our couches don't have removable cushions (one does but has a big cover that's a pain to take off!). We do, however, have an extra crib mattress which we'll put on the floor in the playroom. It will be great for Brianna to step up and down off of and to walk across with it being 'squishy' and help her self-correct. It will also help Micah to get up and down off of it and to do 2 hand assisted walking on it as well.
Another thing was climbing. Of course some kids you try to keep FROM climbing, but that's a gross motor task that the kids could use some encouragement on. In Brianna's school room they have a 'cube' slide which I believe she is able to navigate on her own now. I began looking for a used one (and will continue) but in the mean time we've come up with a temporary solution. Outside we have a swingset with 2 slides and a little bridge that connects them. We removed the smaller self-standing slide from the structure and washed it off really good. Mike drilled holes in the bottom of the plastic to drain out the water that had gotten inside and we're bringing that piece in to the playroom. Though it is still helpful outside, it will get a LOT more practice and use inside and there's still a larger slide and the BIG slide outside to play on (and swings!).
Crawling is another thing that will help Brianna specifically to build upper body strength. She's got the butt-scoot perfected and started crawling just before Christmas last year. She crawls more now that Micah is crawling but needs encouragement still. We bought a tunnel last year that we took out when we got the new kiddos home and have been encouraging Brianna to go through it on her hands and knees. We went to a garage sale before our last vacation and got some big square foam mats that go on the floor and cover 4 sq feet each. We lined them up on the end of the playroom and put our alphabet foam mats next to them. Now there's a soft place for the crawling tunnel and the slide to be together.
The big hammock swings from IKEA are also a great PT tool. They can swing and have to correct themselves some, but they can also spin in both directions which is another important thing to do to build up different muscles as well as (I'm sure I won't say this right) something like the way the brain takes in information. Not exactly sure there but I know it's good for them ;)
For Emma for PT there are several things that we'll begin doing. There are three biggies that will make a huge difference for her, I think. The first is the sheer fact that she'll be receiving PT services now. She started on Thursday and I'm very encouraged at how much she can do now versus only a few months ago. The second is knee immobilizers which will keep her knee in a slight bend so that her knees aren't hyperextended as she sleeps. We may also use them for weight bearing- I'm not sure quite yet.
The third is the MOST encouraging as I saw an immediate WOW when we used them at Hope Haven. On Monday I'll be calling our pediatrician for a script for AFO's for Emma. AFO stands for Ankle Foot Orthotic and is similar to the Sure Steps that Brianna wore until recently. This AFO is actually called DAFO (dynamic) and goes up the ankle to mid-calf (or at least the 'test' ones did). I put a pair of these on Emma at Hope Haven and though they were very big for her, the result was amazing. There's a hinge at the ankle and then the angle of the calf to foot was slightly bent. The PT was able to get Emma STANDING and completely WEIGHT BEARING! This was the first time that I've seen this without Emma hyperextending her knees!! Her knees hyperextend so badly that there's almost a 2" difference from where it should be to where her knee is. What a huge difference! I will try to get an appointment for later this week to fill the scripts for the DAFO's and the knee immobilizers. The knee immobilizers are mostly for when she's sleeping since Emma tends to let her legs rest on the rails of the crib and leave her knees hyperextended when she sleeps. OUCH.
I think that's the "big" PT stuff from our visit. More on the Speech, OT, and educational parts later as well as the medical eval for Emma.
If anyone's considering a trip to Hope Haven Down Syndrome Clinic or any other Ds clinic, I encourage you to go at least once and have an evaluation done. Especially if you've adopted your child with Ds and they're older with varying skill sets. I LOVE our local PT, Speech therapist, and OT but it is always great to have another opinion of skill sets. For me, with Emma not receiving any services until right now, Micah making huge gains in some areas (gross motor) and seemingly NONE in others (find motor/speech), it was great to have someone that's never seen the kids before take a rounded look at each area and make suggestions. It's probably not something that was super profound and yes, our local therapists might have suggested the same things, but getting all the info in one place for all 3 kids was a great thing for us right now!
Saturday, November 08, 2008
Thank you!
Thank you for the prayers for the families posted below, and also for the neat replies to the international view of politics posted below. If anyone has a spare minute I think you'd enjoy reading the replies there. I always wonder how the rest of the world views the US as, I'm sure with all nations, our own media is very ethnocentric and I know other countries pay attention to different aspects of things as well as show sometimes different sides of current events. I'm not all that surprised to see that a majority of the other countries represented in the comments have shown overwhelming support for Obama. When I was in Nassau, Bahamas we saw lots of t-shirts and other paraphernalia supporting Obama as well. It is interesting to see why and what parts of the political race was shown in different countries. Thanks for sharing!
Today we went to IKEA and then to Waterford Towncenter just to window shop. I picked up a few books for Christmas presents and Mike picked up some things for work. We spent the entire day out and enjoyed just hanging out with our family.
I took my camera out at one point to take a picture and was so disappointed to see that it is no longer working :( It says 'lens error' and though it turns on and immediately shows the picture in the back panel, it doesn't focus, tries, then shuts off with the error. Looks like I'll have to dig out the old camera for a bit because I don't know what I'd do without being able to take pictures! That camera is one we bought to go to Ukraine last year and was a Christmas gift for me from Mike. It's sad that it lasted only about a year, but it has been used a LOT and also has been dropped a LOT from my little photographer-in-training...
Today we went to IKEA and then to Waterford Towncenter just to window shop. I picked up a few books for Christmas presents and Mike picked up some things for work. We spent the entire day out and enjoyed just hanging out with our family.
I took my camera out at one point to take a picture and was so disappointed to see that it is no longer working :( It says 'lens error' and though it turns on and immediately shows the picture in the back panel, it doesn't focus, tries, then shuts off with the error. Looks like I'll have to dig out the old camera for a bit because I don't know what I'd do without being able to take pictures! That camera is one we bought to go to Ukraine last year and was a Christmas gift for me from Mike. It's sad that it lasted only about a year, but it has been used a LOT and also has been dropped a LOT from my little photographer-in-training...
Friday, November 07, 2008
A prayer request
I don't want to share more than I'm allowed, but I want to request prayer for a family that adopted 3 children from Ukraine 2 years ago (not special needs ) and has now had a family disruption where the children (3 adopted, 1 bio) are now in 3 foster placements including someone dear to me that has the two boys. Please pray for the children as they were told tonight that their parents were arrested (even tho they were taken away a while ago) and the children are separated for the first time from one another tonight (they have been in a children's home together for a week or more). Pray for the parents as they need it regardless of the charges against them. Pray for the new caretakers of the children as they are adjusting their own families to having one or two new kids.
I'm curious
I see how the press has handled the presidential elections INSIDE the US, but I remember seeing a comment on a forum a week or so ago saying "this election affects the world, not just the US." Now with the election over I feel like I can talk about politics without being slammed with comments and so... I'm curious...
What kind of "press" did this US Presidential election receive from OTHER countries? I know there are hits on this blog from around 20 countries and I'm very interested to hear what (if any) press is being given to this historical presidential election. Anyone care to share? If there's any links to actual articles (written in English) that would be wonderful too!
What kind of "press" did this US Presidential election receive from OTHER countries? I know there are hits on this blog from around 20 countries and I'm very interested to hear what (if any) press is being given to this historical presidential election. Anyone care to share? If there's any links to actual articles (written in English) that would be wonderful too!
Lots of catching up to do!
Wow, seems like forever since I've sat down and just told stories on my kiddos or given any slight detail about our lives! It's been a busy month and November has come off with a BANG too!
Here's a little something funny, though. Today I had the 4 kids and was going to the grocery store. Do you ever see someone you know and teasingly say something out of character- like "excuse me, you're blocking the aisle"- and then when they see it's you they know you're just kidding? Ok, well, I called my mom after I got to Wal-Mart and she was there too. I grabbed a few things I needed at the front of the store then headed back toward the toy section to say hello. She was buying Christmas toys for some kids at the local children's home. So I came up behind her and I said something to her along those same lines. I wasn't super rude about it, just teasingly and she was of course surprised then when she realized it was me she laughed.
Well, you never know when you're going to make a first impression...
In the aisle with my mom was another mom with her son and also a store associate. Realizing they now just think I'm weird I said "this is my mom" and they both smiled and chuckled. But... then... the mom came up to me and started talking to me. "I read your blog" she said. I LOVE when people introduce themselves to me when we're out and about because I love to meet people who 'know' me on here. We chatted for a few minutes and she commented on how tiny the kids are compared to how they 'look' in pictures. That's true!
Anyway, so much for first impressions. I love my mom and tease her and she teases back... but you never know who else might hear your sassy remarks as their very first impression of who you are. I kinda felt bad about it afterward, but, well... what can you do?
Thanks so much, my new bloggy friend, for saying 'hi' and also for offering to help us out to the car when we left. Though I definitely blog because I enjoy it, it's wonderful to know that others are impacted by the work of the Father in the lives of our kids (and us!) too. Thanks for stepping out of your comfort zone to introduce yourself today!
On another note, this morning we had Brianna's evaluation for the school system. I understand that we'll be having her IEP meeting in the next week or two and figure out what her placement will be in January. I'm not sure how I feel about the placement ideas so far, but the evaluation went fine. Brianna's considered in the mildly below average (average being 90-100 she scores just under that) in most areas including fine motor, social, self help, etc. She has more delays in the areas of speech and gross motor because she speaks less than 30 words (sign doesn't count I suppose, which is good because it keeps her qualified for speech intervention) and she is just now walking and not doing stairs or simple transitions yet. She qualifies for PT/ST/OT most likely, though they'll do a formal OT evaluation and are waiting on our PT's eval to determine the goals for her.
I understand that the placement that will be suggested at the IEP meeting will be a 3 morning/week preschool setting at a school 30 minutes from here. It would be M/W/F mornings. This option sounds like a very difficult one for our family. Yes, they would provide bussing. No, I will not be putting my 21 pound 3 yr old on a bus. And driving her 30 min each way three days a week does not sound like it will benefit her or our family with much practicality. This would also most likely mean discontinuing the morning program she's currently in on Tues/Thurs because I know she's not ready to be in school 5 days/week. So if we were to do this, Kristopher would go to school Mon-Thursday, Brianna Mon/Wed/Fri, and Micah Tues/Thurs. And Emma has a homebound teacher come out on Monday and Thursday afternoons (everyone else's is mornings). Plus add in that Micah and Emma have speech therapy on Wed nights (B does right now too but would have it at school instead). And Emma has PT at least Thursday mornings right now but we're trying to possibly get more intensive therapy going for her. Oh, and did I mention that we're about ready to add in OT for Micah and Emma because developmentally they're getting closer to being able to really benefit from it?
Yes, of course, we knew all along that having multiple children with disabilities would require a lot of therapy that would come from several different areas and would be busy to keep up with. Never did we imagine an hour round trip 3 days a week for just one kid in addition to the therapies that come to the house or we go to the local center to do (5 minutes away).
So... I'm not sure what we'll do there. Yes, we have BRIANNA's best interest in mind for whether this is a good placement or not, and we also have the HEALTH OF THE FAMILY in mind as we determine what therapies, school placements, and services we will have for each of our children (including Kristopher) and it HAS to be something that is manageable for everyone and in the end will really provide a benefit.
Ok, that was long... LOL I'm just getting back into this!
Let me end with a question for those of you that have experienced intensive therapy and the use of a therasuit with your children or friends. Our local center has just started a 3 week 5 day/week 3 hours/day program of INTENSIVE therapy that I understand Emma could greatly benefit from. Three weeks of this is supposed to be similar to 1 YEAR of therapy. With the amount of time Emma missed out on any intervention I really think this might be a neat opportunity for her. I don't yet know whether our insurance will cover any of it and it's expensive ($4500) to do. I'm looking in to it, though, and would love any feedback on this type of program from anyone that has experience!
Here's a little something funny, though. Today I had the 4 kids and was going to the grocery store. Do you ever see someone you know and teasingly say something out of character- like "excuse me, you're blocking the aisle"- and then when they see it's you they know you're just kidding? Ok, well, I called my mom after I got to Wal-Mart and she was there too. I grabbed a few things I needed at the front of the store then headed back toward the toy section to say hello. She was buying Christmas toys for some kids at the local children's home. So I came up behind her and I said something to her along those same lines. I wasn't super rude about it, just teasingly and she was of course surprised then when she realized it was me she laughed.
Well, you never know when you're going to make a first impression...
In the aisle with my mom was another mom with her son and also a store associate. Realizing they now just think I'm weird I said "this is my mom" and they both smiled and chuckled. But... then... the mom came up to me and started talking to me. "I read your blog" she said. I LOVE when people introduce themselves to me when we're out and about because I love to meet people who 'know' me on here. We chatted for a few minutes and she commented on how tiny the kids are compared to how they 'look' in pictures. That's true!
Anyway, so much for first impressions. I love my mom and tease her and she teases back... but you never know who else might hear your sassy remarks as their very first impression of who you are. I kinda felt bad about it afterward, but, well... what can you do?
Thanks so much, my new bloggy friend, for saying 'hi' and also for offering to help us out to the car when we left. Though I definitely blog because I enjoy it, it's wonderful to know that others are impacted by the work of the Father in the lives of our kids (and us!) too. Thanks for stepping out of your comfort zone to introduce yourself today!
On another note, this morning we had Brianna's evaluation for the school system. I understand that we'll be having her IEP meeting in the next week or two and figure out what her placement will be in January. I'm not sure how I feel about the placement ideas so far, but the evaluation went fine. Brianna's considered in the mildly below average (average being 90-100 she scores just under that) in most areas including fine motor, social, self help, etc. She has more delays in the areas of speech and gross motor because she speaks less than 30 words (sign doesn't count I suppose, which is good because it keeps her qualified for speech intervention) and she is just now walking and not doing stairs or simple transitions yet. She qualifies for PT/ST/OT most likely, though they'll do a formal OT evaluation and are waiting on our PT's eval to determine the goals for her.
I understand that the placement that will be suggested at the IEP meeting will be a 3 morning/week preschool setting at a school 30 minutes from here. It would be M/W/F mornings. This option sounds like a very difficult one for our family. Yes, they would provide bussing. No, I will not be putting my 21 pound 3 yr old on a bus. And driving her 30 min each way three days a week does not sound like it will benefit her or our family with much practicality. This would also most likely mean discontinuing the morning program she's currently in on Tues/Thurs because I know she's not ready to be in school 5 days/week. So if we were to do this, Kristopher would go to school Mon-Thursday, Brianna Mon/Wed/Fri, and Micah Tues/Thurs. And Emma has a homebound teacher come out on Monday and Thursday afternoons (everyone else's is mornings). Plus add in that Micah and Emma have speech therapy on Wed nights (B does right now too but would have it at school instead). And Emma has PT at least Thursday mornings right now but we're trying to possibly get more intensive therapy going for her. Oh, and did I mention that we're about ready to add in OT for Micah and Emma because developmentally they're getting closer to being able to really benefit from it?
Yes, of course, we knew all along that having multiple children with disabilities would require a lot of therapy that would come from several different areas and would be busy to keep up with. Never did we imagine an hour round trip 3 days a week for just one kid in addition to the therapies that come to the house or we go to the local center to do (5 minutes away).
So... I'm not sure what we'll do there. Yes, we have BRIANNA's best interest in mind for whether this is a good placement or not, and we also have the HEALTH OF THE FAMILY in mind as we determine what therapies, school placements, and services we will have for each of our children (including Kristopher) and it HAS to be something that is manageable for everyone and in the end will really provide a benefit.
Ok, that was long... LOL I'm just getting back into this!
Let me end with a question for those of you that have experienced intensive therapy and the use of a therasuit with your children or friends. Our local center has just started a 3 week 5 day/week 3 hours/day program of INTENSIVE therapy that I understand Emma could greatly benefit from. Three weeks of this is supposed to be similar to 1 YEAR of therapy. With the amount of time Emma missed out on any intervention I really think this might be a neat opportunity for her. I don't yet know whether our insurance will cover any of it and it's expensive ($4500) to do. I'm looking in to it, though, and would love any feedback on this type of program from anyone that has experience!
Wednesday, November 05, 2008
back home again...
I know it's been a boring blogging week, but in a nut shell...
We had 3 evals for the kids including a medical for Emma and all went great. I'll give details on each kiddo at a later time but I'm glad we went despite the driving times and feel lie we got some good info to start with and things to work on with the kids.
I have not been feeling great still- I had the stomach bug last week on Wednesday night/Thursday and I still just don't have a good appetite so I'm kindof dragging and it's been a busy week on top of that.
We had a great time today after the evals hanging out at an outdoor mall/shopping plaza and then meeting up with friends in JAX for dinner and just time to hang out. Thanks Jen and Frank for having us in your home, it was great to meet BIG Zack :) I hope we can get together again before another 2 years fly by!
And lastly, I think Mike made record time home from JAX tonight. We left at 8:45 and arrived home at 10:30. 1 hour 45 minutes. Takes me 2+ easy ;)
Goodnight... Hopefully more tomorrow!
We had 3 evals for the kids including a medical for Emma and all went great. I'll give details on each kiddo at a later time but I'm glad we went despite the driving times and feel lie we got some good info to start with and things to work on with the kids.
I have not been feeling great still- I had the stomach bug last week on Wednesday night/Thursday and I still just don't have a good appetite so I'm kindof dragging and it's been a busy week on top of that.
We had a great time today after the evals hanging out at an outdoor mall/shopping plaza and then meeting up with friends in JAX for dinner and just time to hang out. Thanks Jen and Frank for having us in your home, it was great to meet BIG Zack :) I hope we can get together again before another 2 years fly by!
And lastly, I think Mike made record time home from JAX tonight. We left at 8:45 and arrived home at 10:30. 1 hour 45 minutes. Takes me 2+ easy ;)
Goodnight... Hopefully more tomorrow!
Tuesday, November 04, 2008
Monday, November 03, 2008
LONG day but wonderful!
I took Micah to the Down syndrome clinic at Hope Haven today in Jacksonville! I will tell all about it... later :) It was great though and on Wednesday we bring the girls in for their evals too.
I also had two big treats because I got to have lunch with the most beautiful 5 yr old girl in JAX and her mommy, my friends Kara and Kathy. We spent over 2 1/2 hours at the cafe chatting! Micah and Kara were both great (Micah slept through most of it) and I had a great time 'catching up' with Kathy. Kara thought I made a pretty good jungle gym and I think we're buds now ;)
Then I was disappointed to not get to meet up with my youth pastor's wife (who I haven't seen in about 6 years) because of scheduling, but since I'd set up childcare at home... I called to check that they were fine and I went shopping at the outlets in St. Augustine :) I had a good time with just Micah with me and found some clothes to 'fill the gaps' in the kids' winter clothes. I'm pleased with what I found :)
Then the 2 1/2 hours home again and I'm beat. School in the morning x3 so I'm off to get clothes out and pack lunches...
I also had two big treats because I got to have lunch with the most beautiful 5 yr old girl in JAX and her mommy, my friends Kara and Kathy. We spent over 2 1/2 hours at the cafe chatting! Micah and Kara were both great (Micah slept through most of it) and I had a great time 'catching up' with Kathy. Kara thought I made a pretty good jungle gym and I think we're buds now ;)
Then I was disappointed to not get to meet up with my youth pastor's wife (who I haven't seen in about 6 years) because of scheduling, but since I'd set up childcare at home... I called to check that they were fine and I went shopping at the outlets in St. Augustine :) I had a good time with just Micah with me and found some clothes to 'fill the gaps' in the kids' winter clothes. I'm pleased with what I found :)
Then the 2 1/2 hours home again and I'm beat. School in the morning x3 so I'm off to get clothes out and pack lunches...
Saturday, November 01, 2008
Lord,
Listen to your children praying.
Lord, send your spirit in this place.
Lord, Listen to your children praying.
Send them love, send them power, send them grace.
Father, you watch over the weak, the homeless, the orphaned and those without hope. Your wings are broad enough to cover each one and I have to say, at times I just don't understand it. I don't get how each of the children on that Angel Tree page are there living each day in an old house surrounded only by children and never knowing the love of a parent. So many are just abandoned and left just minutes after birth. More than that is their fate after their 4th or 5th birthday when they're transferred into the institutions where the filth, disease, and hunger are overwhelming. The neglect, the abuse, how can this happen??
I know I'm just one person and that my small and insignificant impact of bringing home my own children won't save all the others over there, and yet I know that You still called us to it and it was a part of our purpose. I know that I can't save the world. Only You can. I sit in wonderment, one minute in pain and the next in joy, as I look at nearly 100 faces staring back through the computer screen at me and knowing that you have a plan for their lives. The older boys that are so hard to find families to commit to especially tug my heart because it seems that as I look at their photos, they'll be the next ones I get an e-mail about saying they've been transferred to a mental institution- not long followed with the announcement of their death.
And yet I know that these children hold a stronger testimony than I do. My own testimony is weak as I am still learning so much every day on how to lean and depend on You. But these children, they have stories to tell. Even those that may never have a voice to speak it, those that make it home have a testimony. One of Grace. One of Power. One of You.
Last year You know how much time I spent grieving over the little angel named Daria when she appeared back on the Angel tree after her adoption didn't take place with her first family. You know how much I fought and cried to try to bring her home with my own little Sasha that we were trying to get to. When all the answers here on Earth turned to 'no', we knew Your will was being done, but our sadness was still rocked for little Daria as I had that same gut-feeling that on that 5th birthday that was quickly approaching she would be transferred to the institution and the next report we'd get was that of her death.
Instead you turned our sadness to joy, our grieving to laughter. Yes, it came at a cost as we weren't able to bring home our Sasha after all. But the testimony that you've now given little Daria, our Emma, is beyond what anyone could fathom. You've brought her to us, changed her name the day before her date of transfer, healed her heart, mended her lungs, and You continue to grow her body and strengthen her to make her able to do so much more than I imagined. Your hand is leading her and her testimony has provided a jumping point now for other families to come forward and bring their own children home.
Last year she was a face on the "Angel Tree" whom I grieved over. Now she's a living testimony of Your goodness and glory.
Lord, help me to have that faith that each child will come home this year. Provide the families. Provide the funding. Provide the changes necessary in governments where these children live so that they can come home sooner and without as much bureaucracy. Broaden the reach of the testimonies of those who have come home. Help me to continue to be a voice for You, a voice for the children, and lead me in the path that You have for me to continue to advocate for these.
Father, this Christmas, help us all to be reminded of those without families, without food, without love. Help us to step back from the lights and toys and gifts and to give from our hearts.
And be with each child as they wake each day and lay their heads down each night. Provide comfort. Provide warmth. Provide food. Provide love. It's only through You that we are a family, and it's through you that each waiting child will find their family as well.
Thank you, Father, for the gifts you've given us this year. Help us to be a beacon of Light for those who follow. Amen.
Lord, send your spirit in this place.
Lord, Listen to your children praying.
Send them love, send them power, send them grace.
Father, you watch over the weak, the homeless, the orphaned and those without hope. Your wings are broad enough to cover each one and I have to say, at times I just don't understand it. I don't get how each of the children on that Angel Tree page are there living each day in an old house surrounded only by children and never knowing the love of a parent. So many are just abandoned and left just minutes after birth. More than that is their fate after their 4th or 5th birthday when they're transferred into the institutions where the filth, disease, and hunger are overwhelming. The neglect, the abuse, how can this happen??
I know I'm just one person and that my small and insignificant impact of bringing home my own children won't save all the others over there, and yet I know that You still called us to it and it was a part of our purpose. I know that I can't save the world. Only You can. I sit in wonderment, one minute in pain and the next in joy, as I look at nearly 100 faces staring back through the computer screen at me and knowing that you have a plan for their lives. The older boys that are so hard to find families to commit to especially tug my heart because it seems that as I look at their photos, they'll be the next ones I get an e-mail about saying they've been transferred to a mental institution- not long followed with the announcement of their death.
And yet I know that these children hold a stronger testimony than I do. My own testimony is weak as I am still learning so much every day on how to lean and depend on You. But these children, they have stories to tell. Even those that may never have a voice to speak it, those that make it home have a testimony. One of Grace. One of Power. One of You.
Last year You know how much time I spent grieving over the little angel named Daria when she appeared back on the Angel tree after her adoption didn't take place with her first family. You know how much I fought and cried to try to bring her home with my own little Sasha that we were trying to get to. When all the answers here on Earth turned to 'no', we knew Your will was being done, but our sadness was still rocked for little Daria as I had that same gut-feeling that on that 5th birthday that was quickly approaching she would be transferred to the institution and the next report we'd get was that of her death.
Instead you turned our sadness to joy, our grieving to laughter. Yes, it came at a cost as we weren't able to bring home our Sasha after all. But the testimony that you've now given little Daria, our Emma, is beyond what anyone could fathom. You've brought her to us, changed her name the day before her date of transfer, healed her heart, mended her lungs, and You continue to grow her body and strengthen her to make her able to do so much more than I imagined. Your hand is leading her and her testimony has provided a jumping point now for other families to come forward and bring their own children home.
Last year she was a face on the "Angel Tree" whom I grieved over. Now she's a living testimony of Your goodness and glory.
Lord, help me to have that faith that each child will come home this year. Provide the families. Provide the funding. Provide the changes necessary in governments where these children live so that they can come home sooner and without as much bureaucracy. Broaden the reach of the testimonies of those who have come home. Help me to continue to be a voice for You, a voice for the children, and lead me in the path that You have for me to continue to advocate for these.
Father, this Christmas, help us all to be reminded of those without families, without food, without love. Help us to step back from the lights and toys and gifts and to give from our hearts.
And be with each child as they wake each day and lay their heads down each night. Provide comfort. Provide warmth. Provide food. Provide love. It's only through You that we are a family, and it's through you that each waiting child will find their family as well.
Thank you, Father, for the gifts you've given us this year. Help us to be a beacon of Light for those who follow. Amen.
The Kids' Halloween Costumes
My little Spidey! He wore the mask for a bit but couldn't see well to play with it on...
Fairly in training... Brianna looked adorable as Tinkerbell!
This was a unique outfit, but still cute ;) It's a 'fairy' but it's a pumpkin... It was awful cute on Emma regardless and the wings velcro'd on the back instead of going around her arms so she didn't mind them too much :)
In shining armor... Micah made a very cute knight!
Can you tell the girls were a little tired? We have very few pictures from the Harvest Fest (these are about it, other than a few more attempts at a a group shot) and yet two of them look like the kids are yawning! Emma's covering her mouth at least ;)
Skeet shooting, this was cute with foam disk shooters and birds hanging from the ceiling! Micah hung out in someone's arms all night...
Brianna refusing to smile... LOL and Emma, being Emma :)
I think this one's the best group shot we were able to pull off. Notice K is holding M into the chair (he wanted to nose dive) and I'm holding Bria back from going to get DADDY! I believe E might have her finger in her ear too LOL ah... family photos with 4 that are 5 and under!
Don't forget- FALL BACK
Set your clocks back an hour tonight! (or you'll be late to church in the morning!)... I MEAN EARLY! LOL oops!
Thanks Andrea for the reminder!!
Thanks Andrea for the reminder!!
That was a waste...
I took Emma to the doctor this morning after calling, saying she has broken blood vessels again same as about 3 weeks ago and I wanted to know if I should bring her in. Of course they say yes (they ALWAYS say yes, I don't know why I bother to ask any more but this is why I've decided that I won't even call usually). So I hurry around to get her there in 45 minutes (30 minutes away) and that is where I should probably stop retelling the tale.
Because I was not happy and I live in a small town and shouldn't speak ill of anyone.
But, for the sake of saying what is important, I will tell you that I was told very sternly that it is not petechia and then was drawn a description of petechia, then he went to get a medical book to show me what petechia REALLY looks like (which was surprisingly similar, in all accounts, to what E's underarms look like...). He then tested her for strep (??) because her tongue looks dark. Um... Obviously that came back negative (obvious to me) and we were told she probably has a virus that she's having a rash with.
A rash. From a virus. Only where she's had contact with pressure. With only a runny nose (a constant for her) to suggest a possible virus. Somehow I'm not so sure I agree there.
So we went home after a few more select words were exchanged and I was given a stern warning not to find out everything I can about Ds because I would never sleep at night if I knew it all and to just treat my kids like every other kid. Because I don't?
Yes, my kids are much like other kids, and we do strive for that 'inclusive' behavior, but this is the same model that we had with a former GI doctor that refused to chart Brianna on a Ds chart and insisted she was severely below norm and needed her tube feedings increased. On the Ds chart she followed a beautiful curve and we stopped seeing that doctor, stopped tube feeding, and quickly found another GI doctor that looked at her pretty curve and said "great!"
With that I say, yes, treat my kid as if you would any other child. BUT, when it comes to being proactive in health, know the risks, know the signs, and be cautious before you tell me she has a virus- twice in one month- causing a rash to develop that is under the skin and shows up only in areas where pressure is applied.
I do not overreact with my children, I don't assume that just because she's got this going on it must be something major. No, I'd like to guess it's just a fluke that is happening, but I'm not naiive enough to believe that I should write it off as nothing and not check on the more serious things that my child is at a higher risk for. I call the health professionals when something 'unusual' develops and seek their medical expertise to tell me whether it's something I need to pay attention to or not. In this case, I was told twice YES and now, NO. I really do hope he's right.
Our regular ped wanted to rerun bloodwork anyway so we will pick up a script from her on Monday with whatever panels she wants drawn to double check on things. We probably would have done that even without the repeat incident. Then we will hopefully agree it's a fluke after we have a pretty blood panel come back. But only after we cover the bases.
Because I was not happy and I live in a small town and shouldn't speak ill of anyone.
But, for the sake of saying what is important, I will tell you that I was told very sternly that it is not petechia and then was drawn a description of petechia, then he went to get a medical book to show me what petechia REALLY looks like (which was surprisingly similar, in all accounts, to what E's underarms look like...). He then tested her for strep (??) because her tongue looks dark. Um... Obviously that came back negative (obvious to me) and we were told she probably has a virus that she's having a rash with.
A rash. From a virus. Only where she's had contact with pressure. With only a runny nose (a constant for her) to suggest a possible virus. Somehow I'm not so sure I agree there.
So we went home after a few more select words were exchanged and I was given a stern warning not to find out everything I can about Ds because I would never sleep at night if I knew it all and to just treat my kids like every other kid. Because I don't?
Yes, my kids are much like other kids, and we do strive for that 'inclusive' behavior, but this is the same model that we had with a former GI doctor that refused to chart Brianna on a Ds chart and insisted she was severely below norm and needed her tube feedings increased. On the Ds chart she followed a beautiful curve and we stopped seeing that doctor, stopped tube feeding, and quickly found another GI doctor that looked at her pretty curve and said "great!"
With that I say, yes, treat my kid as if you would any other child. BUT, when it comes to being proactive in health, know the risks, know the signs, and be cautious before you tell me she has a virus- twice in one month- causing a rash to develop that is under the skin and shows up only in areas where pressure is applied.
I do not overreact with my children, I don't assume that just because she's got this going on it must be something major. No, I'd like to guess it's just a fluke that is happening, but I'm not naiive enough to believe that I should write it off as nothing and not check on the more serious things that my child is at a higher risk for. I call the health professionals when something 'unusual' develops and seek their medical expertise to tell me whether it's something I need to pay attention to or not. In this case, I was told twice YES and now, NO. I really do hope he's right.
Our regular ped wanted to rerun bloodwork anyway so we will pick up a script from her on Monday with whatever panels she wants drawn to double check on things. We probably would have done that even without the repeat incident. Then we will hopefully agree it's a fluke after we have a pretty blood panel come back. But only after we cover the bases.
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