Friday, May 10
As we finish off one year, we are getting ready to immediately jump in to another school year here at home, though. Last year I started homeschooling for the current year in June. I really liked doing it that way!! This year we'll take a month off and in mid-June we'll start our 2013-2014 school year here at "Cornish University" (haha, no, it's not an actual incorporated school, just what I jokingly call our household school! I'm the President and Educator, WOOT!!).
I'm excited to say that next year we'll be stretching our homeschool to include one more member of the family! Kristopher will be joining us here at home for 4th grade! He and I were talking in the car this morning and he's looking forward to the self-paced movement of homeschooling but will definitely miss all of the wonderful friends he's made in school this year. He looks forward to staying in touch with them and will continue in the out of school activities that he's built wonderful relationships through (youth groups and karate!). He'll be using the Accelerated Christian Education curriculum and is going through the testing process right now so that we start right where he is rather than ahead or behind where he needs to be. It's been exciting to see how he's testing already, and we are glad for him to have this individualized path for school this year. It's also a very independent-based learning which he does WELL with, and it will allow the flexibility we will all need to make life work together.
In addition to Kristopher using the ACE program, Brianna and Lynae will be using it for some subjects as well. Both of the girls were able to take the online (free!) diagnostic testing and I was pleased to see that Brianna has tested through 90% of the first grade skills in math and reading, and that Lynae has as well! I want to really solidify the skills and go back to work on those that they are missing (neither of the girls is reading well yet) so I plan to start both of them at the beginning of first grade in the ACE program. Of course, their progress will be much more parent-directed than Kristopher's. Lynae has informally done Kindergarten and now first grade with me as Brianna has homeschooled through those grades, and though she's turning 4 in September, we're letting her progress at her own pace. We're regularly asked if she will go to school at some point, and to that we don't know! She isn't eligible to even attend 4 yr old PreK for another year!
For our other 5 school-aged children, Aleksa and Emma will be 4th graders "by the books" and Wesley will be 2nd grade, James and Micah 1st grade (Brianna is also 2nd grade). These grade levels mean very little to us, because we are teaching on their developmental levels.
It was asked in a homeschooling group about how to make your own IEP so you have something to measure goals by as you go throughout the year. Though I don't do this "formally", I do have an informal way of doing it that I'd like to share so others might be able to glean whatever they may be able to off of it to use for themselves.
In determining goals, I look at what I want my child to accomplish in 1, 3, 5, and 10 years and as an adult. Consider what skills are needed to make those things happen.
For some of my children, my 5-10 year goals include independence in ADL (activities of daily living) and following a "list" of directions. For instance being able to have a list (picture or written, depending on the child's current perceived future goal, though I work on reading with ALL of them, some are more likely to be competent readers than others at this time) of activities for them to do in the morning. Wake up, look at your list. Go to the bathroom, start a timer for 10 minutes and get in the shower, get dressed, make and eat breakfast, put dishes in the dishwasher, take their sheets off their bed and start the washing machine, then start a 30 minute timer to play on the iPad before their day gets moving with whatever is on the schedule for that day. (Or whatever that day's chore/routine needed to look like. Following a list allows for change without remembering what happens which day that makes them different!).
This amount of independence I desire for my kids, and I am working on all the "little things" that they can accomplish with it now. I'm working on setting timers and being able to complete a task in that time. Working on toileting, dressing, buttons and snaps and putting on socks and shoes. Working on pouring cereal and milk. Reading, following a list. Doing a task to completion. Coming back to me for a next direction rather than finishing a task and going to do something else. For toileting, once trained, work on the entire process. Tearing toilet paper off the roll, washing hands, following the entire routine without assistance. Showering, prompted steps through the body to wash, which means they know their body parts. Tooth brushing and OT skills to hold firmly and move the hand around to get the toothbrush everywhere...
Then there are academic goals, which for me focus on whole life as well. Counting, recognizing numbers, 1:1 correspondence, skip counting so that eventually we'll get to money. I want them to be able to go in to a store and make purchases off a list and pay for it, knowing how much is within the amount they have and how to do it independently.
I want the kids to be able to and WANT to read for enjoyment, though some of mine are so significantly delayed that I'm not sure if that's realistic. So, in the mean time to teach that, we use Leapfrog TAG books and teach the turning of pages, following the directions of the page turning, and that type of skills that go with reading, so that they can still enjoy this type of activity whether or not they read.
I could go on and on, but I suggest to anyone wanting to set these type of goals for their homeschooler (or to give this type of input in to your child's school IEP!) you look at these types of things YOU want your child to do and work on the things that will eventually get them there. If you want a list of NOW skills, write them as formally or informally as you'd like to. There's also an old book (out of print) that a friend of mine showed me that's called Luke's List. Two books, actually, One is Luke's School List and one is Luke's Life List. Each goes through the developmental steps to attaining final goals and it's a very comprehensive book. I don't know if there's anything more current that lists it out, however developmental milestone lists would be a starting point to know "what naturally comes next" to work on those emerging skills.
We are looking forward to the new school year, the newness of having Kristopher home and beginning new curriculum with some of the kids!
Tuesday, May 7
God has made it clear to us that we need to be a part of a church that all of our children have a future in.
They need, right now, to be a part of an appropriate Sunday morning program, and in an environment that our kids with special needs will have the capacity to grow and learn in alongside their typical peers, and where needed, more individually.
We recognize that every person, every child, has a soul and that our children with special needs' souls need to be fed and ministered to just as much as our "typical" children. All of our children need to know that they are of infinite value and worth within God's Kingdom, and in the Church.
Because of this, we are looking for another church to attend as a family.
Due to the nature of Michael's job at Park Avenue, he cannot continue to be employed by them if he doesn't maintain active membership. Because of our strong family convictions and the inability for our family to incorporate further in to the church as a family, Michael will be resigning from his position at PABC.
We trust that God has a great plan for our family and look forward to where He has us to be. We appreciate your prayers and petitions to the Throne on our behalf. We also appreciate any "earthly" help you may provide if you'd be interested in being a part of this journey and assisting in bringing any potential IT, marketing/graphic design, and business related jobs to our attention. You can view Michael's resume and portfolio at www.mcornish.com. We are willing to relocate if that's God's plan.
Thank you for your prayers, and we walk forward with Hope and Knowledge of a Loving Savior.
Keep reading... http://cornishadoptionjourney.blogspot.com/2013/05/more-thoughts-on-change.html
Let me take a minute to share with you our heart in all of this. I believe there are four groups of people that will be processing this differently.
The first group: NON-BELIEVERS. Those that look at this situation and think “this is why I don’t believe.” I hope you will realize two things. 1- we don’t follow MAN, we follow GOD. 2- not all men have the same convictions, and the Bible isn’t always 100% clear in everything. See the 3rd group below for more on that.
The second group: BELIEVERS who think we are crazy. Yes, we have a large family, adopted kids, special needs kids, and we homeschool. Any one of those groups leads us to have people that disagree with us. We are used to it. We are ok with that. We are responsible to God and ONLY God, and in that we know there will be plenty of people that disagree with us… even believers :).
The third group: BELIEVERS who think that there is a problem in the church. We struggle with this because of our own convictions, and I recognize that many of the people that read this will have similar convictions. Here is where I am trusting the Lord and knowing that He has great plans in this. Not everyone’s convictions are the same. There are some things that are VERY clear in the Bible. I believe there IS ABSOLUTE TRUTH. There are also other topics in the Bible that require us to go with the promptings of the Holy Spirit. Not to stir up trouble, but this would be an example of where people’s convictions differ: Drinking wine. Jesus performed a miracle to create wine from water. But then it says not to lend yourself to drunkenness. Some would say don’t ever drink so there’s not temptation. Others would say drink and don’t be drunk… it differs. Churches take a stand on it. People take a stand on it. Yet, it isn’t a piece of ABSOLUTE truth. I believe that this topic falls in to the category of convictions. I strongly believe, and God is working on my heart to trust Him in it, that the Holy Spirit is the one to CONVICT, and that is absolutely not my job.
The fourth group: BELIEVERS who know that God moves in mysterious ways, and we are following Him. If this situation had not come about, we would continue to be firmly planted. Now, we know that God is moving us, without a doubt, in to a new season.
We walk in to this new season with NO BITTERNESS or ANGER or DISLIKE toward our church for their actions. We are sad, yes. But that is because of the things that right now feel like losses, not because of the absence of a ‘program’. It is because of the community that we have been a part of that we are stepping away from due to our own convictions.
I hope and pray that your heart will understand these decisions and that if you struggle with the decisions of our church, the Lord will pierce your heart with understanding and you will recognize that we are following a great and wonderful God and not man. HE IS SOVERIEGN. :)
Tuesday, April 30
Here are the four articles I've written on special needs and the church in the last few months :).
The Special Needs Soul (guest posted on Gillian Marchenko's blog)
When God's Gifts Look Like Limitations: My Plea To The Church
When God's Gifts Look Like Limitations PART TWO: My Plea To Families Of Children With Special Needs
When God's Gifts Look Like Limitations PART THREE: From The Families
Here's the blog post that I wrote on April 11, 2008 about our sweet Emma. Looking back, I can still feel that raw emotion, but also the spark of HOPE. On August 4, 2008, Emma had her life saving surgery and on August 8th she came home from the hospital! Our little miracle girl. Here's a little post from the past about our Emma...
From April 11, 2008:
That little face deserves a second chance... and even a third!
The cardiology appointment went much as we expected yesterday. Our local cardio agrees with the one that did the cath and says that the surgery could likely be fatal for Emma. She said she sees the things that were discussed with us and agrees with all the findings. She then stopped and LOOKED at Emma. Didn't examine, didn't feel, didn't do anything medical. She just LOOKED. And Emma was sitting up on my lap looking right back.
Then she started to talk. And it wasn't about her heart. She said that the little girl we brought in there a month ago was spacey. She didn't flinch at the doctor's touch or react much to anything. Then the cardio leaned forward and Emma followed her in with her eyes. They met.
Our cardio is of Indian (India-Indian) heritage and has been doing this for 30 years. She has a lot of experience and is good at what she does. She sees past the condition and sees the child. Next she looked at me and said that God saved this child. Emma's been through so much already and deserves a chance. Let's talk about what happens if she doesn't have the repair.
She went on to describe the process of dying that would transpire. I won't go into detail here but it wasn't a pleasant picture. No picture of death is pretty, but still...
Our cardiologist has known us for 2 years now. She's walked us through pre-op and post-op with Brianna. She encouraged our needs and wants, she advised us, and she treated Brianna well. Now she was looking at me and telling me the sweet things that many who have followed Emma's journey have said- she's a miracle, she's a blessing, let's get her fixed.
Although the risks related to the surgery are VERY high, there is no 'risk' in the alternative. It is definitely an ending, a painful and long one that will begin soon. If Emma is that small percent, if her strong will and God's hand pull her through, she can have a long, happy, healthy life.
We will meet with the surgeon during his next clinic in Orlando. He's the hand that held Brianna's heart. We'll hear his opinion before we go any further. I don't know what we will do after that. So much depends on each doctor's input and outlook on her prognosis. But we continue to stand on the HOPE that He gives us. Not only that the surgery will happen and be a success, but that God's grace will surround us and will protect Emma no matter what decision is ultimately made for her.
Pray for our girl, pray for Mike and I as we continue to search through everything and know the way God is leading for Emma.
Monday, April 15
God knew we wouldn’t decide on our own to adopt a 5 yr old that weighed 17 lbs, needed open heart surgery which may or may not even be possible. A child that lived her entire life in one crib and didn’t like to be touched or held or even looked at. A little girl that chewed her hands raw, ate only broth from a bottle, and smelled like… well… death.
Instead He called us over to adoption with the idea of a healthy 5 yr old with Down syndrome that walked, talked some, and was generally in a pretty good disposition. Our faith was stretched to get through the 5 month process for those ‘minimal’ needs!
God took our faith the size of a mustard seed, and walked us through the process and somehow He grew a TREE. He brought home the sick little girl of the first description, the healthy little girl of the second description, and in the midst of all of that, added another 3 children through adoption and 2 more through birth!
God knew our faith was small. TINY. Yet, He grew the tree that He had planned anyway!
Now, once again, I think my faith is looking like this:
Yes, that’s an actual mustard seed.
Is the faith of a mustard seed a GREAT faith? Knowing that BIG things will be done even from its small small start?
Or is the faith of a mustard seed referring to faith the actual SIZE of the mustard seed? Tiny, miniscule, but still enough to make a TREE one day?
No matter how you see it, I want that faith.
The faith that can know that my own existence is miniscule. My own reach is small. But I know that I serve a God SO BIG that through Him, the impact can be great. My faith can be multiplied. Be used for His purpose.
We have a lot of changes happening in our home and family right now. A lot of things that I can’t make completely public yet. I see them as good change. Through this time we’ve been given a greater vision and a stronger purpose for our family “mission”. Change is still hard, though. Just about every area of our lives is being touched by these impending changes, and we need that faith that knows that God is IN this. God is LEADING this. God knew this from the beginning. And most of all, God has a plan for it all that will bring Him glory!!
As you think of our family, please lift us up in prayer. We ask for God’s discernment, His timing, and His direction.
((PS: No, we are not adopting again))
Wednesday, March 20
Thursday, February 21
On Jan 16th Aleksa and Emma went to Hope Haven Down Syndrome Clinic for evaluations in occupational, physical, and speech therapies and an educational evaluation as well. We got some neat ideas for continuing to build them up in each area and took James on January 30th then Brianna and Micah on February 13th. One of those things is getting new orthotics for several of the kids (all but Brianna have them currently) and we have appointments for all of those to be made on Monday morning.
On Thursdays we continue to have 10 therapy sessions every week, OT and PT sessions (7 sessions) in the morning and 3 ST sessions in the evening. Hopefully we'll be adding back in 3 more ST sessions as soon as another therapist is hired! :)
We also have Saturday morning horse therapies every week, and 4 of the kids ride each week. Our horse therapy location is about to move, so Saturday will start a week with some extra "barn raising" efforts to help them break down then re-settle at their new location.
February 2nd our family walked/ran the Light the Way 5K which is a fundraiser for Park Avenue Christian Academy. My dad and I switched out between pushing a triple stroller with Brianna, James, and Micah in it, and carrying Delaina. It was a long 3+ miles, but we made it. And, my dad is in better shape than I am, I admit it! :)
February 4th Wesley turned 8!! :)
February 5th James and Micah both had ABR testing done at the children's hospital. They both passed in the normal range, which means I'm back to square one with Micah's hearing difficulties since the brain CAN hear the frequencies (but in a booth he doesn't react at anything below 55 decibels and in 'real functional life' he doesn't appear to hear much of what is said). We see the ENT again on Monday morning!
February 7th Wesley had an appointment with the physiatrist and was recommended for another round of Botox, which he'll be having done this coming Monday afternoon.
Did you catch all those "Mondays?" Yes, we have 6 orthotic castings, 2 ENT appointments, and an appointment for Botox injections all on Monday. Fun stuff. :) We'll get it all done together though!
February 9th Michael took Brianna, Lynae, and Aleksa to the Father/Daughter Dance and they all had a great time! :)
February 12th James and Delaina both had well visits complete with booster shots. Delaina's still TINY, surprised? Not really. :)
February 15th Kristopher, Brianna, Delaina, and I drove up to southern Alabama for the weekend to enjoy a little get-away. Wait, the get-away was for me!! :) Kris and Brianna played with Shelley Bedford's kids and her husband while she and I snuck away for the day on Saturday, then we spent Sunday around their house before driving home on Monday. We had a nice visit and some much needed down time! :)
February 18th was a special day-of-note! It was our 5th anniversary of Micah and Emma's adoption! Hard to believe that it has been 5 years since our court date to finalize their adoption!
February 19th is also a special day, Emma's 10th birthday! That means that she has now been home for longer than she was in the orphanage :). For our children that spent time without families, that's a special mark and a day we look forward to for each of them! :) :)
February 20th Wesley saw the orthopedic doctor and was recommended for a lengthening surgery on his hamstring on one leg. We were told we could wait for 6-12 months even before having it done, but that it will need to be done eventually... Not really great news, but thankful that there is an option to help him!
Today is February 21st, and this morning started with an orthodontic appointment for Kristopher and having spacers put in. Michael also took James to the pediatrician to have his "finger pricked" because James slammed his ring finger in something and it was swollen beneath the nail. ICK. What a way to start the day!
Next week brings a very busy Monday with 9 appointments and Kristopher has another orthodontist appointment to have impressions done to get ready to get an "appliance" placed in a few weeks.
We are continuing to home school six of the kids plus Lynae (who isn't school-age yet but still participates in everything!) and Kristopher is in private school. I started a new reading curriculum with the kids this week (Thanks Shelley Bedford for the help getting started)! so we'll see how that goes. I love that we can home school on the go, and our busy days we can still be productive with schooling :).
Then... February will be over!!
Tuesday, February 5
View the previous posts in this series:
PART ONE: When God's gifts look like limitations: My plea to "The Church"
PART TWO: When God's gifts look like limitations: My plea to Families with children with special needs
The first director used to go to other churches and speak about the importance of inclusion and acceptance in the Church, and how they could start a ministry of their own. She no longer is the director, but is still a Buddy.” –CL
These quotes have been used with permission.
Saturday, February 2
See the first post here: When God's gifts look like limitations: My plea to "The Church"
If you aren’t attending a church because you have a child that cannot attend and because there is not a church that has an appropriate accommodation for your child to participate in so that you can attend, then there is no use in me writing to you to share my views on inclusion in the church or how it is supposed to look.
We all know that what we hoped would be and what life really looks like can sometimes be a stark contrast, even when we LOVE the life that we are living and genuinely would not change it for anything. We know we can see our own GIFTS from God as LIMITATIONS in what we can do in life sometimes.
More than anything, as a parent of children with special needs myself, I can share a few things about what it means to me to be different, what it means to want something for yourself and your child but know that it is unreasonable, and what it means to be rejected.
The only burden there is in your family and mine is the burden of CARE that we, as parents, place on our shoulders. We often accept the “self talk” that says we need to bear our own troubles. We don’t want to be “that family” that asks for others to go out of their way for us. We don’t want to be known as “the family with kids with special needs.” We don’t want others talking about us, discussing our children.
Wednesday, January 30
Although I appreciate the vigor and excitement that others have over the prospect of something like that being written, I recognize and greatly respect the process that a Bible study is written with, and I don't feel called nor equipped to be the author of any study right now. More than anything, right now I NEED a study. I need to be fed and I'm not in a place to be of spiritual leadership to others that are in the same boat as I am and who have been floating out here even longer than I have as a parent of a child with special needs.
In the last 6 months I've asked a lot of people a lot of tough questions. I've drawn some difficult conclusions, made up plans of action, and set up meetings within my own community of faith to see what our answer is to this very post.
I am writing this to "the church," an ambiguous body that I've addressed publicly several times over the past months. "The church" isn't my own church or believers in our denomination. It isn't people in our town or even our own state. "The church" is every organized body of believers in Jesus that consider themselves a part of the greater Body of Christ. If that includes you and your own community of believers, then this plea is for you as well.
A child is a blessing. A gift from God. There’s never any question that every child is a gift, even when the child has special needs. Whether it’s a developmental delay, a physical difference, blindness or deafness, or a sensory integration issue, the child is still a special blessing from God.
I know that the pastoral and executive leaders that are known to me personally wouldn’t dream of actually saying that, but by their inaction, they say just that to the community of families affected by a person with special needs. There is not an intentional discouragement from including these families in the fellowship of believers by pastors and congregations, however the lack of intentional inclusion doesn’t leave these families with many options for participation.
READ Part TWO: When God's Gifts look like limitations: My plea to Families of children with special needs
Written by Meredith Cornish
This post may be copied in its entirety. Please do not edit the content if copying this post. Please e-mail Meredith before publishing in any format other than social media, FaceBook, blogs. Thank you. MeredithCornish@gmail.com
Thursday, January 3
We went anyway. :)
Sunday afternoon Michael started on his project... build-a-pantry. He finished it on New Year's Day and it is WONDERFUL! :) A 4' x 2' pantry that extends up to the 10' ceiling. Exactly what we needed for our family's needs and it looks great in the laundry room.
We invited a friend over for New Year's Eve which then turned in to three couples coming over including our friends, my parents and sister and brother-in-law. We had fun just hanging out and that good ole midnight toast (minus the bottle of alcohol free 'champagne' which someone happened to break the neck off of and send glass shards flying...)!
Wednesday flew by as Michael returned to work and I attempted to tackle our "closet room" to attempt to make some better arrangements in there that maybe... just maybe... we (I) can keep up with better for 8 of the kids' clothes. That, and actually caring for the 9 children, which is of course more important and made the task take allllll day long!
Thursday was therapy day, which would be today! 2 1/2 hours of OT and PT rotations for 5 of the kids (James had this week off) and Kristopher and Lynae were in tow again since their school isn't back in session until next week. Plus Delaina, of course, which equals 9 little people, and a lot of 'busy' in the gym room at our therapy center! Then tonight our speech therapist came out to the house to work with three more kids and I disappeared for an hour, leaving Michael with all 9 kids, quite possibly for the first time while they were all awake... though he may have kept them that I don't recall.
I took off to the shooting range! It was my first time firing... or even holding... a gun... or even a bb gun for that matter... :) I shot a 9mm and did pretty ok if I do say so myself :) I hit the 'target paper' every time, got ONE bullet on the "outer body", maybe 8 or so on the inner torso, and every other bullet was straight on the target. That was one dead piece of paper, as a friend put it!
This afternoon I scheduled James' g-tube revision to put in his Mic-key button, and surprise surprise... it will be tomorrow! Mike will be taking him for that since it can be difficult to juggle the baby and James, and Mike probably prefers to take 1 child to the hospital rather than keep 7 at home again! :) I'm sure James will do fine, and it will be nice for ALL of us to have the low-profile button for James since he's constantly flapping it, pulling on it, having it dangle, etc. The mic-key is much more manageable and will give him more 'freedom'.
Saturday is horseback lessons again, for the boys this week, and then our last Christmas celebration, this time with my siblings.
I can't leave off one of the most important parts of the week, though, and that is sweet Brianna's 7th birthday today!! It's hard to believe that she is seven already! I'm sure I say it every year, but wow, how her birth has changed our lives so much, and for the better! We are so grateful for a wonderful medical team that kept both she and I safe and made some tough calls through her emergency delivery, and for our pediatricians that kept searching to get answers about what was 'going on' with her.
We didn't know that Brianna was going to be born with Down syndrome, and even after her birth we didn't have any indication that she had Ds. It wasn't until she was 5 weeks old that doctors began to suggest that they had been seeking out answers for several weeks and wanted to run more diagnostic testing to 'rule out' any chromosomal abnormalities. In fact, they told us they were considering a different issue pertaining to chromosomes. When Brianna was 8 weeks old we got the phone call to say "come to the pediatrician's office now" during their lunch break and we were brought in to a room and told "there's a problem with Brianna." Then, as they told us that she didn't have the condition we were originally told they were considering, but actually had Down syndrome, our hearts' burdens LIFTED and we were grateful that God had gifted us this little baby girl with a condition that to us... was nothing bad :). Of course we also were told to go straight to the hospital because she could have a heart condition, and two days later that fear was confirmed when we learned that she had a major defect in her heart and would need open heart surgery... But none of that was a part of her birth story.
Brianna is such a beautiful gift to us, and her life gave us the ability to say 'yes' to more children who we may or may not have felt the same burden for if it wasn't for her. Our lives could have been very different, but I wouldn't want to have it any other way. What a blessing it is to have each of our children, and to celebrate the joy of Brianna's birthday today! :)
Saturday, December 29
James had quite the adventure the last two days, so here’s my way of documenting it for myself, and just for kicks you get to read about it too… If you really want all the details of this little 48 hour ‘adventure.’
On Thursday James began a new medication prescribed by his neurologist. We were waiting until after the holidays to start him so that we would be in our routine and not off doing other things and we would know if it was really helping him or not. The medication is one used to help kids with developmental delays and ADHD to be able to better focus and have more “control” over impulses. It’s the same medication that Aleksa has had GREAT success on.
Thursday he did great! In the evening he was tired, which is unusual, but that was a great effect of the meds if it was the meds that caused it. Friday morning he was SLEEPING at 7 when I got everyone up. James is NEVER asleep. We never know how much sleep James actually gets because he wakes so frequently at night (he has a special needs covering on his bed so he can’t roam the house or hurt himself). Our guess was that he likely woke up most of the night after the med wore off and then was back asleep in the morning.
We got James up, he toileted as usual, got breakfast and was pretty sleepy, but generally did fine. He ate only about 1/2 of his breakfast, but James goes in to moods of eating and not eating, so it wasn’t anything unusual. He got down and played with the other kids, got in trouble, was a generally ‘normal’ morning for him.
Around 11am I called the kids in to the main part of the house out of the play room (a converted porch that runs the entire length of the back of the house) since Delaina was down for a nap in an adjoining room and they were yelling while playing. James walked in, tripped over his own feet, didn’t look down while walking and seemed to not be paying attention to the toys he was needing to navigate past.
I called him over to the kitchen table since he seemed ‘off’ and he climbed up in his chair and sat. He seemed to not be focusing well so I was keeping an eye on him, noticing that he didn’t seem to be moving his eyes within his eye socket, just looking out of the tops of them. I continued making lunch, but when I got him his cup to let him start drinking, he picked it up without grasping it very hard and dropped it. I asked him to give me 5, and he took 3 times of me requesting it before he lifted his hand in a half-hearted attempt.
I was concerned, but still he seemed to just be a little out of it. He’d woken up sleepy still, maybe he was still tired? Not so much. He then went from ‘groggy’ seeming, to picking his cup up and drooling the liquid out of his mouth. He started slumping over in his chair. I noticed that no matter what I tried, he wouldn’t move his eyes in his eye sockets.
Then, I called Mike and asked him to come home ASAP while I abandoned “making lunch” and instead stared at James and started pulling together his medications, feeding pump and supplies, clothes for Delaina, and diapers for both kids. We were leaving for the ER ASAP. As soon as Michael came home he grabbed the rest of our things together and got the car seats and strollers set up for me to go and I got myself ready. In that time James went from slouching in the chair and drooling to falling completely out of the chair and not being able to support himself sitting. The idea of calling an ambulance only flashed through my mind for a moment before I considered that our hospital that it would take us to didn’t have any pediatric specialists and we ultimately needed to be at the children’s hospital almost an hour away.
We talked only a minute, but considering that James was breathing and not actively seizing (though it sure looked like he was having seizures…), we decided the drive of 45 minutes west would be more helpful than 25 minutes north. Off Delaina, James, and I went.
At the hospital we valet checked the car and went in through the emergency room. When the people in front of us finished signing in, I was holding James and sat where I was asked to. He promptly threw up next to the registration woman’s shoe. She asked “so he’s throwing up?” and I said no, that’s the first time, but I think he’s having seizures. She looked at him as his eyes rolled back up in his head and they skipped the paperwork and brought him back to triage. He threw up again in triage but was weighed and they grabbed his medicine bag to get down his med names as they went through his history and what led up to this event.
We went back in the ER and were met quickly by multiple people- doctors, interns, and nurses- who worked him up with blood pressure, O2 saturation, etc. The entire time we discussed the “episodes” myself, the doctors, and the nurses who experienced it with us said that he’s having seizures. He was brought back for a CT scan pretty quickly which he laid in like a limp and lifeless child. It was SCARY to think that he had gone from perky and happy to this incoherent child so quickly, and that he wasn’t “snapping out” of it.
After the CT scan the ER doctors suggested that the episodes could be a dyskinesia effect caused by James’ new med, not necessarily seizures. This idea never did get ruled out, however the episodes certainly seemed much more like seizures than they fit the description of this side effect. Even still, the seizures could also have been caused by the medication.
James began “coming to” around 4pm after a short nap. He was given benadryl shortly after that in case it was a dyskinesia issue as well. At this point our neurologist was consulted (she isn’t affiliated with this hospital) and the CT scan results were also available. James has a small ‘spot’ on the brain that could cause seizures. Because of that, our neurologist said she didn’t want him to just be sent home until they were able to rule out that he wasn’t going to be at a high risk for more seizures.
At that point James was admitted and we knew there would be an MRI and an EEG happening before he was able to go home. When the pediatrician came in to admit him, he threw up all of the tube feeding that he’d had from 7-8pm. It was the only food he’d had since breakfast. A dose of Keppra was also given, which is an anti-seizure medication.
It was after 10pm when a bed opened on the floor we were headed to so we were moved upstairs and got settled in. James was asleep again and sleeping soundly, so I was able to go next door to the cafeteria and get some much needed “lunch” to bring back to the room and eat. A nurse asked to have James’ reflux med since it’s not one that they carry so it could be verified with their pharmacy. Then she brought it back and said that the pharmacy wouldn’t verify it since it’s a liquid, and that the doctor could override that but refused, so they couldn’t give it. She hinted that we could refuse their suggested ‘alternate drug’ if we’d like and I said yes, then used the syringe that happened to be left with the bottle after she left and gave it to him. That is how it goes sometimes… Yes, it’s allowed :). It was after midnight when the last of the doctors and nurses that needed to talk with me came through.
Every 45-90 minutes the rest of the night different people came through to check vitals, put respiratory meds in the room, drop off anesthesia forms, and the like. Between that, sleeping on a cot, and having Delaina wake to eat during the night (and share a bed with me which always leads to sore muscles and poor sleep out of care to be watchful of how she’s sleeping), I got very little sleep! James, however, slept ALL THROUGH THE NIGHT. I’ve NEVER had him sleep through the night, especially when people are all around him and touching him, etc. He slept until after 6am!
In the morning I was able to change clothes and get Delaina dressed. Then the different doctors, residents, respiratory therapist, and nurse came in. A pharmacist came by… to verify the reflux med. Weird? Yes. She looked at it, stuck a sticker on it, then went on her way. That made life easier. By 9am there was a man there to do the EEG and he checked to be sure the timing was ok, then went to go get things ready. The nurse came and said to be ready to go to PACU and the respiratory therapist was in the room. A wheelchair showed up for James, and so did the man for the EEG. Apparently, we were going to PACU for the MRI and there was just a miscommunication between people which had 3 things happening at the same time for James.
Since MRI is harder to ‘get in’ on the schedule for, we were brought down to PACU for the MRI to be done. There appeared to be some miscommunication with all of that too. James was in the wheelchair with his chart, but PACU was expecting a nurse to be there with us that would be administering an IV med for sedation during the MRI. That didn’t happen. Apparently that nurse was being called in and and wasn’t there yet. So…we met with the anesthesiologist, got permission to give James his reflux med (which was now officially verified), then after waiting about 20 minutes they brought us back up to the room.
The neurologist came up to the room at that time and spoke briefly with me. Her view and mine don’t exactly mesh as far as some of her opinions of behavioral control and medications for a child with Down syndrome, however she was ‘on call’ and available for this situation, so it was ok. Unfortunately, I didn’t have the opportunity to ask questions and only saw her before all of the testing was performed. She definitely came to inform me of a few things then to leave. That was fine, however I expected to have her give us some results later on which never did happen.
A little while later the nurse that would do the sedation came in and spoke with us, then said she would be back shortly to take us over for the MRI. Sure enough, she came back about 12 and we went over for the quick questionnaire and to sign consent forms. Delaina was in her carseat and stayed in the “outer room” while I brought James in and settled him on the table for the MRI. Before going in the room with the machine I had to take out my cell phone, coins, etc because the magnet is always active. I asked about my belt and they said “you might feel some pull, but it’s ok”.
They asked me to go to James’ head to keep him calm and help him lay down while he was beginning to get drowsy from the medication. As I stepped closer to the machine, I lost my balance! Why? Because that magnet is so strong that my belt buckle was about to knock me over! (No, it’s not a big buckle! LOL)
While James was scanned, Delaina and I went across the street to the other hospital and had some lunch. Just as I was throwing away my trash my cell phone rang and they asked me to come back over and meet a nurse by the employee entrance. James apparently POPPED up when the machine stopped running and they wanted to make sure he wasn’t going to be upset without me there. He’s usually pretty good, but I did go right away.
When I got there James was behaving, however he was also giving the nurse trouble. His blood pressure was 140/90 and similar. Not good! He was calm, relaxed, and his BP during the scan was more around 95/40. After calling the pediatrician just to ‘report’ it, his BP started to go down at least a little and we moved back up to the room.
Once we got up they did another blood draw, this time to check his thyroid (never did find out why, or the results. I realized this when driving home!). Soon after that the man came back for the EEG. James “did ok”. He was back to his baseline. What does that look like? Jumping on the bed, touching everything you say ‘no’ about, giggling, breaking down in fits of wiggles, then the very next second screaming in a fit of anger. This is James. He did ok, considering :).
After the EEG we finally got a sippy cup and some drink down him. He kept that down! First time! After a little time we were told that James would be released and there was a new prescription for sleep med as well as a request to follow up with the neurologist’s partner that practices about 30 minutes from our home. The floor nurse commented that since there’s no seizure med ordered, that there must not be any imminent risk and that the follow up would be to discuss the MRI.
We finally left about 5:15pm and headed out for fast food and a drive home. Once we got home I took James out of the car and he practically fell over. He had zero balance whatsoever! He came inside and continued the same. Eventually he perked up a little bit, got a shower, meds, and went to bed.
Now, it’s time for a good night’s sleep for Delaina and I as well!
Monday, December 24
It’s been a while since I posted (Sorry Linda!) but, here’s the crew! It’s been a busy and exciting December and I have lots to share… some other time :).
For now, it’s time to go to sleep so Santa Clause can come. I wanted to share this picture of our crew in their Christmas Eve clothes after church tonight. Thanks Heidi for the suits for the little boys! They were all adorable :).