Hearing Issues Revisted

I'm writing tonight about some mildly disconcerting news we got today about Jordan's hearing.

I want to preface it though...

Being a teacher of the Deaf and Hard of Hearing I have a pretty good understanding of the implications of a hearing loss. For this reason I take hearing loss very seriously and want to be sure to clearly say that I am not in any way making light of hearing loss or amplification by putting this picture in my post. I was trying to find ear pictures and pictures on hearing etc and I came across this one which I chuckled at. In life sometimes it's helpful to find humor in small things (or big things in the case of this photo - ha ha).

On to my story.

With Jordan's cleft palate that extends into her eye and elsewhere (no doctor really knows the damage that was done in her sinus area and inner/middle ears due to the amniotic banding) Jordan needed ear tubes to drain excess fluid that would build up in her middle ear. The tubes allowed the pressure to be released and the fluid to drain out. When fluid is present hearing is significantly affected therefore tubes are very important. She has had three sets of tubes put in and they typically work their way out of her ear drum within 12 months or so (common). I've begun recently to be concerned about the damage a lifetime of tubes will do to her ear drums and I've wondered about scar tissue that can also affect the eardrum's movement (hearing loss).

To make a very long story kinda short - I finally got her to a Speech and Hearing Center that specializes in children with hearing loss. Most of my students go there and I know that they are the best in the area. Once again it was so surreal to be going through the exact things my student's families go through. We did the standard ear check (they found that the tube is out in one ear) but that there is no fluid (meaning no tube needed). The preliminary test in her right ear showed that the tube was intact but that there might be some issue. Next we did the official hearing test where she responds when she hears a sound. I assumed everything was fine and that I was just being paranoid. Then I noticed the doctor reviewing all the positives regarding her left ear and as she was going on and on about how great that ear is doing I noticed she was holding her folder up so I couldn't see the audiogram (results of the test). My mouth went dry and suddenly it like the day we were in the OB's office and she was telling us about all the things "wrong" with our baby that they found on the ultrasound. All I could hear was the voice from the Peanuts cartoon. I knew she was saying important things but I couldn't really "hear" what she was saying. All I heard was..."She does have a mild hearing loss...I'm not recommending hearing aids 'at this point...'" I struggled to think of a single intellectual question to ask her. I just repeated what she was saying a few times to be sure I was hearing her correctly (no pun intended).
The icing on the cake is that as I was leaving I ran into a family I work with. This is a family that it has seemed everything has gone wrong with since I started. Ever have that happen? I can say with all honesty that it has been just one of those things that really has nothing to do with me. As I'm leaving with my kids, trying to process through what I had just heard I'm also trying to navigate my way through chit chat with this Mom and her daughter. It was challenging to say the least.
As I think back through what she said it doesn't feel as major, although it is a little tough still not knowing if it will progress or what we'll do now as far as ear tubes, scar tissue, etc.
One friend tonight was feeling for Jordan and said something about Jordan not getting a break - it's one thing after another. It totally feels like that and she is right that it appears that way at first glance but when really digging in she has had so many near misses or close calls or "breaks."
A few:
- At the 20 wk ultrasound the doctors said her issues could be grave and that we should consider killing her. (ahem, I meant to say "terminating the pregnancy")
- At birth they said she would have significant feeding issues and may need a G-Tube to eat.
She was the best cleft affected eater they had ever seen.
- Her genetic testing came back and they discovered it was Amniotic Band Syndrome this probably won't happen to us again or to her children).
- Her extra fluid in her brain resolved itself with no medical intervention (hydrocephalus).
- We've been able to have every surgeon and doctor that we've requested despite our HMO's rules (there have been a lot!)
- A breathing issue that went awry during a surgery was caught and resulted in a week on a breathing tube but thankfully not a tracheostomy.
- Her hand surgeon said once to a resident that Jordan was a worst case and I corrected him letting him know that worst case would've been being born with no hands.
- Her orthopaedic surgeon said that many doctors may have amputated her lower leg but that it was good that we had a doctor who opted to try to correct it instead. Praise the LORD!
- She kept failing hearing tests when she was younger (I'm talking profoundly failing them) but the middle ear issues were resolved giving her hearing.
Without any breaks Jordan could have been profoundly deaf, with amputated hands and one foot, needing a shunt to drain the fluid from her brain and a feeding tube to get her nourishment. It's encouraging to look at that list and then compare it to where she is today. By God's mercy, the last three years have been hard but she is doing great and my guess is that a mild low-frequency hearing loss will not slow her down.

Halloween 09

My mom got Noah a Jeff Gordon Nascar racing suit and Jordan was going to be the usual - a princess. However at the last minute I decided Jordan would do something different for a change. One of the many years past when we missed Halloween due to surgeries for Jordan I grabbed a few costumes from a marked down $1 bin. Among those was a cute bumblebee suit. It was absolutely perfect and totally adorable on her! My favorite so far.
Our church put on a giant "Fall Fest" as an alternative to Trick-or Treating and it was a total blast. Nearly 8,000 people went (from the community - our church isn't that big) so thankfully they had a great toddler area which was perfect for our kids.

Noah and his friends Dylan and Sheadon. These boys are so sweet with each other and have such similar personalities. It's nice to see their bond and affection for each other.
This is Miss Hawley (Katie) who is a dear friend's sister. Isn't she beautiful?!!

This is Braydon - seriously it's so funny with these two. They both are smitten with each other and ask about each other randomly through the week. Look at his sweet face looking at Jordan!

Not quite a modified Nascar race car but I guess an elephant bumper car will have to do.

They are SOOO cute!!!!

"Refer"

One magic little word...."Refer" used to replace a much harsher sounding word..."Failed."
Being a teacher of the deaf I was certain my children would be born deaf. The newborn hearing screening wasn't mandatory at the time but I made sure Noah was screened. Then with Jordan and all of her issues they told me they weren't going to check her hearing. They said it wasn't routine. I very politely informed them that I wasn't leaving until they checked it.
Well she got a "Refer" which is a nice politically correct way of saying that she failed her hearing test. For four months she tested with "no reponse" to sound. The audiologists assured us that it was probably just fluid but I wasn't able to look at or even go near the shelf in our house with my textbooks on hearing loss until I knew for a fact that she could hear. The potential was devastating to me. Thankfuly she got ear tubes and was cleared with great hearing.
I've wondered a few times about all the ear tube surgeries she has and what the lasting effects will be on her tympanic membranes (ha - big word for ear drum...just thought I'd impress you with my vocabulary). A while back she "referred" during a doctor's visit hearing screening but an audiologist who doesn't usually test kids said she was fine (even though I heard her miss high frequency sounds). Then I took her again to the ENT for something else and she "referred" again. Later I tested her myself on an audiometer and it showed a high frequency loss. I chalked it up to attention. Today we were back at the ENT for a tube check and she "referred" again.
The doctor thinks it might be hearing loss due to scar tissue. Bummer. We're praying that they don't send us back to that same adult only audiologist and that we can get to the bottom of this. Thankfully I think it is only in one ear which means even if it's a significan high frequency loss she would not necessarily need hearing aids.
We will keep you posted on the insurance approval and the test results. Pray that we can get in to Providence and that we can get some advice on these surgeries and the lasting affects of ear tubes. Her ENT said she'll have to have them forever.

Making the Most of Every Opportunity

A couple days ago a friend asked on Facebook if anyone had any advice for her toddler who has to be sedated for an endoscopy (a camera thing is put down his throat into his G.I. tract I think to find out why he eats so little). If I'm wrong, correct me in the comment section.

Anyway - he has to be sedated so her question was how to comfort him and prepare for the anesthesia and how to get her mind around the sedation.

I began to reflect on my experience with Jordan (8 sedated surgeries in two years with one of the surgeries resulting in nearly a week of sedation with a breathing tube which can make people so crazy that they typically keep them full of anti-anxiety medication the entire time). I relish the few times that our challenging experiences can actually prove useful for other families in similar situations, facing the same feelings and needing practical advice.

Often the first thing that comes to mind is the basic practical advice such as, try to enjoy the time in the waiting room with a cup of coffee, a book, undivided time to read your Bible, etc. This time my mind very quickly went to "making the most of every opportunity."

Ephesians 5:15-16

"Be very careful, then, how you live—not as unwise but as wise, making the most of every opportunity, because the days are evil."

As Christians (those who put their trust in Christ) we are promised trials and it does matter how we face those trials. We should anticipate these times and see them as fantastic opportunities to "train our children in the way they should go so that when they are old they will not depart from it." Proverbs 22:6 My sugestions to Kim were to use this as a time to put her words into action and show her son what it really means to trust God. It is a chance for her to pray with him, to explain (in 2 year old language) the sovereignty of God, the directive that we are to "be anxious about nothing but in everything by prayer and petition with thanksgiving, present [our] requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus." Phil 4:6-7 She can be self-controlled and strong for her son as he looks to her for a reaction and response.

I have prayed so much with Jordan over the past three years that she has come to rely upon prayer (as much as she can really get her little mind around it) as a source of comfort and strength. With eight surgeries she has had literally countless doctors visits, pokes, prods, needles, tests, x-rays, pin removals and of course her all-time favorite the cast removals using the handsaw. I can't count the times I've had to hold her down and she still talks about cast removals with her screaming and me covering her mouth with my hand. She would know it was coming so while we waited for the doctor to come in she would literally CLING to me while I prayed with her. After her last big surgery she was in pain, uncomfortable and literally all she wanted was for me to pray. She would cry non-stop, "Pray Mama, PLEASE!" This reliance on prayer (at a very basic level for comfort) came from me purposing, as scripture commands, to make the most of every opportunity. As John MacArthur states in his commentary, "We are to make the most of our time on this evil earth in fulfilling God's purposes, lining up every opportunity for useful worship and service."

Everything in our lives, as Christians, should be used to "redeem the time" (MacArthur states that this refers to one's lifetime as a believer) so what better opportunity than to show your children directly how to do well in trials. I hope that Kim will make the most of this trial with her son to practically show him God's plan for us during the trials in our lives.

*******

I LOVE this picture for the post because it captures the image I have in my mind that I've seen countless times...my daughter - my baby - staring at me, unable to say anything, watching and waiting for my response in order to gauge how she should respond. By God's grace and through MUCH prayer I can look back and say that much of the time I made the most of those opportunities.

Jordan's New Sling

Here's a little post on my latest sewing project.
I wore Jordan in a sling exactly like this for more than 2 1/2 years since she couldn't walk much of the time. It was the best gift ever. Mine was made by Jenny Woodward who also jumped on the hospital gown ministry right away. Her blog is http://www.doctrineanddiapers.blogspot.com/ and you can see her projects under the craft link on her page.
I copied her pattern a year ago or so and made a smaller version for Reese Woodward and have since made another one for a neighbor, Cassidy and also matching slings for Jordan and her little girlfriend, Reagan (her 3rd birthday is Tuesday).
I used a coupon so each sling cost me less than $5.00!
Here's a picture of Reagan and Jordan

Here's Cassidy and then a picture of her birthday sling.

I'm so thankful to my mom who bought me my sewing machine - Thanks Mom!

Audiometry

This month has been SOOOO crazy with Jordan's appointments in addition to a slew of additional appts for her school district assessments AND I now work two days a week AND Shannon is doing his mortgage work along with taking classes toward his master's degree. Yikes.

Today was the day Jordan went in for her vision and hearing screening with the district nurse. Many of you may not know that I am a teacher of the deaf (really I'm just a mom but my credential and master's says I'm a teacher of the deaf so two days a week now I'm both a mom and a teacher). Most of my schooling was in the area of specialized instruction for deaf/hard of hearing children with some speech pathology courses and some audiology courses. Because of this, I was particularly interested in Jordan's vision and hearing screening today. When I talked to Shan and asked him what they did, what type of equipment they used he chuckled and said something like, "You're gonna love this. Are you sitting down?" He proceeded to tell me that they told her to turn around and then the nurse rang bells and made different sounds with various toys. If Jordan could hear them then she passed. I nearly fell out of my chair. I was at work so I asked our nurse why on earth that would be their protocol. She said it is a very antiquated way that schools used to check hearing. No one uses that method anymore according to her. She told me they now use an audiometer, which is what I was expecting from our local district. She let me take hers home to test Jordan myself for peace of mind.

Here's a sideways picture of the audiometer. It kept rotating sideways when I posted it - sorry.

It presents tones through headphones at various frequencies and decibels so an actual audiogram can be made. It also isolates each ear so you can tell the hearing in each ear independently.

Being an audiology student and teacher of the deaf, I can't tell you how many textbooks I've seen with cute kids holding blocks up with their headphones on, waiting to hear the tones.

I love learning about the intricacies of the middle and inner ear and how perfectly things must work together for information to reach the brain. It is truly fascinating stuff. To be able to give my own children hearing tests was SO fun and to see them with their own little blocks in hand was really so cool.

When Jordan was born I requested a Newborn Hearing Screening. They said no (not in so many words but basically they resisted). I persisted and basically said that I didn't want to leave until they checked her hearing. With everything else I needed to know she could hear. She failed. We took her to an ENT then an audiologist who did an ABR - Auditory Brainstem Response test which measures the brain's response to sound. She got no response. I was devastated to say the least. I went home several times after various audiological appts and stood in front of my textbook shelf and cried. I couldn't make myself pull those books down to look at them as a parent. I couldn't face the thought that of all disabilities she could be deaf. I knew the challenges from my schooling and my job. I knew what deafness would mean for her and for our family. After more tests were done it was suggested that it was simply fluid and that once she got tubes put in her ears that she would hear fine. Thankfully at four months she got tubes and we found that her hearing was fine. I was beyond relieved. Since then I've worked very hard to make sure her tubes are in place and that her hearing, despite fluid, infections and tubes is managed. She failed her last brief hearing test in one ear at the ENT's office so I was relieved to be able to test her myself.

One more quick note is that I offered to also test my neighbor and her daughter. Her daughter came back within normal limits but my friend showed a significant high frequency loss. She has suspected it for a while but hadn't had time to go get it checked. She's relieved to know now and to be encouraged to get a full work up. I also gave her handouts describing the type of loss that showed up on her chart tonight. What a fun toy this is. Anyone else wanna try it? :)

Quick Update on JJ's Progress

I had a few minutes here on a Saturday while Shannon is at the men's retreat and I'm a total vegetable on the couch with the kids watching a movie - after a morning of cartoons (yes, I'm a bad mom) so I thought I'd post a quick update.

September is a VERY busy month for us as I start working two days a week (boo hoo!), ministry starts up at church for us and the kids, Shannon starts school again (and works full time with our Real Estate Mortgage business), Noah starts his one morning a week preschool again, Jordan continues with therapy as usual and we go through the crazy process of Special Education testing through the local school district. Uggg. Today is a much deserved morning on the couch with the kids. I'm loving it!

As for Jordan's update - she is doing very, very well and it's great to see. This month she is being assessed in the areas of gross motor, fine motor, speech/language, pre-academic and cognitive skills with our local school district. We aren't expecting her qualify for services in any area, thankfully, but we want to be sure and we want to know for sure that she is closing the gap developmentally and that her medical issues haven't caused delays that need to be worked on. Next month we are expecting her to only have therapy one morning a week and no surgeries scheduled on the horizon for another 2 or 3 years. I can't imagine! She will be three this month which a whole blog post in itself.

A big milestone recently is her ability to go up and down a few stairs without assistance. It's so exciting. She is physically becoming more and more independent all the time. She's beginning to be able to hang on monkey bars for a couple seconds (showing increased hand strength and flexibility), she is beginning to learn to use special scissors to cut paper, she can draw circles and lines on paper, she is only wearing her brace part-time now and is graduating to a smaller brace in a week or so. She's just doing so great and it's fun to see. I put a video on here of her climbing the stairs in front of our house. We've been working toward this since she began walking after her surgery earlier this year.

I will be posting more pictures soon and then of course her birthday post - she turns three on September 30th and we're heading to Disneyland with our "princess" for a day of celebration. Yes she will be in costume - princess of course.

Refurbishing

Recently I got two new books, thanks to a 2007 Amazon gift card from my brother. The card fell behind the drawer and I just discovered it. I knew instantly what I would buy with it. I had been eyeing these books for a while now. I follow a blog of a woman who wrote two books. One on fostering creativity in your family and the other on using old items to make fun new things.

Her blog is http://www.soulemama.com/ and you can get a link to it here or on my list of favorite places.

Here are her two books

So in the spirit of refurbishing I've recently taken up arms against stained clothes. I can't stand to throw away cute clothes and Jordan is CONSTANTLY staining her clothes. We jokingly call her Pig Pen (Peanuts cartoon) as she is constantly dirty and dragging her even dirtier blanket around with her.

I've taken a few pictures of what I've done to cover her stains and salvage her shirts.

Regarding stains...
Bleaching seems to be the quickest and easiest but on patterned shirts a quick sewing on of a picture or shape works well. You can always look through other stained clothes to find cute pictures or designs and save yourself money on fabric too. Save old shirts that aren't salvageable and sew buttons on various stained spots, sew shapes or patches onto shirts too. Patches seem like they'd be too heavy for lightweight fabric but making your own from any cotton material works well too.

Another clothing issue that is particular to our family is clothing missing sleeves and legs.
In this picture Jordan has on my all-time favorite shirt. Like many others during one of her months in a cast we cut one arm short so it could fit. Sadly over the past couple of years I've thrown away so many great pants and shirts because they've had a leg or sleeve cut off. Tonight I figured out how to sew a stretch seam with my machine. I just cut the other arm short then sewed matching stretch seams and voila! a new shirt.
Stay tuned for a really fun, exciting post on shoes! I met with Jordan's foot surgeon and we have good news...and of course great pictures.

Conflicting Desires

An article was forwarded to me by a friend today. It was a thank you note to parents of children with special needs and there was a part of that article/letter that stood out to me and made me think a bit more about raising Jordan.
I thank you, special needs parents, for your tireless attempts to wrestle with your own conflicting desires. On the one hand, you want the best possible support for your child in their battle, finding the best schools, the top techniques, and the latest research to justify special treatment. On the other hand, you strive to normalize your child and his surroundings, never allowing your child's special needs to rob them from the joys of "normal" life, nor excuse them from the painful lessons that life has for all of us. Those of us without special needs kids face this same internal battle, wanting to both protect our kids from life's dangers and yet expose our kids to life's lessons. For showing me how to fight this battle on both ends, equally holding up both protection and exposure as valuable, I thank you.
Special Needs, Special Love
Hal Runkel, LMFT
I can relate so well to this author's description of "conflicting desires" for children with challenges. As put so clearly above, we want the best of every opportunity for Jordan which often means exhausting effort fighting insurance companies, persuading doctors, constant therapy, financial strain as a result of exorbitant medical costs and equipment, etc, etc. At the same time we do indeed want her to live a “normal” life of park dates, quiet family time, having friends, swim classes, dance classes, and other fun things typical kids do.
Even beyond this it brings to mind something I was sharing with a mom at work just today. This is a mom whose son was born with microtia and atresia (malformation of the ear). He is a child on my caseload and when he’s about six he will have a series of surgeries to create an ear. She was concerned with how to respond to various aspects of surgeries in regard to her son having the surgery and also his brother. I was able to share with her that God has absolutely allowed this event/trial in her son’s life and that, as a believer, He will sustain her and provide her with everything she needs. I told her about Jordan’s insanity at doctor’s offices that came as a result of surgeries and that during her times of fear and worry I would explain to her that we are not to be “anxious in anything but in everything by prayer and petition present our requests to God and the peace of God which surpasses all understanding will guard our hearts and minds in Christ Jesus.” (Phil 4) I would pray with Jordan before, during and after doctor’s visits and eventually she would ask for prayer. After one big surgery she was fearful and in pain and asked for me to pray with her every five minutes or so. Here is where the “conflicting desires” come in (as the author talked about above). I’m sad for her trials but at the same time I fully understand that without them she would not be forced to lean on the Lord for comfort. Although she is not saved she already has, at two years old, an intellectual understanding of God as comforter, healer, provider. For all of that I’m thankful for her affliction. Her challenges have given me an opportunity to demonstrate what it means (in good times and difficult) to live for Christ and to fully trust in God’s sovereignty (if He were not indeed loving He would never have sent His own son to die on our behalf!).
As the author talks about two “conflicting desires” of wanting to protect our children yet expose them I’m able to say that by God’s grace I am thankful for what He has exposed Jordan to because of what it offers her and the rest of our family as well as those involved. I feel for her when she’s in pain or when common daily tasks are a struggle but I’m also thankful for so many rich experiences that directly send her to our Heavenly Father. When I think of it from this perspective it's really no conflict at all.

Homemade Ice Cream in the Summer!

I am so excited to post this -
When I was a kid summers were spent at my grandparents house (that they built themselves when my dad was young) in the swimming pool (that they put in themselves), and ocassionally eating ice cream (that my grandpa made himself). I especially remember many a 4th of July with all of my cousins and family swimming, jumping off the diving board, eating in the backyard then lighting fireworks and eating homemade peach ice cream. Shannon, the kids and I were in Bakersfield recently visiting the Woodwards and we had delicious homemade vanilla ice cream (thanks Jen Garcia!!!). It brought back such memories! We went to visit my family in Palmdale on our way home and I mentioned to my dad that I'd love to have Grandma and Grandpa's old ice cream maker. If you read back through the blog you'll see that my grandpa died a year ago last April (on Noah's birthday). Since then my dad has asked me if there is anything special I'd like of my grandpas. I asked him if I could have it and we set out searching for it. If you look at the pictures from about a year ago on the blog you'll see that this wouldn't be easy. We searched the service porch, the garage and finally out to the barn we went and finally found it covered in dust but wrapped in it's original box. My grandpa never threw anything out so we figured it was there somewhere.
I have been so busy since then that today was the only time I had to possibly do it. Shannon's mom was here for dinner so she helped...

(She thinks it is roughly a 1960's model ice cream maker)

Noah was such a helper and the kids were so excited! All through dinner he kept checking on it to make sure it was still okay. When Jordan bumped the door into it he ran in the house and said, "Mommy! Sissy bonked the door into the milkshaker!!" We all laughed so hard.

Jordan seems to like it!