Today My Heart Broke for My Baby Girl...and Therapy Anger Rant

Today I found I faced an emotional place that I don't go very often.  Jordan had a rough morning.  I'm not sure if it has to do with the time change this past weekend or if it was just a rough day.  She was pretty much in a state of constant whining, crying, fussing and there was nothing I could do to help her.

I put her in her chair this morning for her feeding and she picked out her video (as usual) and I put it in and went into the other room to do devotions with Conner.  Within minutes she was whining and fussing and crying and yet said she didn't want a different movie and didn't want to get down.  I left her there and finished with him just to hear her continue to whine.

After she was done eating, we went downstairs for school and she seemed to go back and forth between playing nicely and crying.  Eventually, I had her in her swing doing her listening therapy so Conner could focus.  Finally, we moved upstairs for her feeding and Conner and I read a story in the bedroom.  By the time her feeding was done, I was hoping for a short playtime before lunch.

However, for some reason, Jordan started crying.  I tried to hold her, hug her, talk to her, play with her, read to her...but nothing helped.  I finally sat down with her and asked her "what is wrong?"  She just cried harder...and my heart broke.

See, here's the thing, I have a 3 1/2 year old daughter who understands and comprehends like any other 3 1/2 year old child...but she can only communicate on the level of about a 15 month old.  Can you imagine?!?!?!  What if you understood everything that was being said and asked of you, yet you were unable to put your thoughts into words to tell the world what you wanted or needed.  I know that this morning, Jordan knew what she wanted, however, she was so limited by her disability that it broke her heart...and mine.

I know I haven't posted much about her therapy recently, but we are facing a difficult dilemma.  Last spring, we thought Jordan would be in the Early Childhood Special Education classroom for Grandville, but the teacher was not comfortable with her in the class (and neither were we) due to the fact that she put EVERYTHING in her mouth.  We decided on itinerant speech 2 times a week for a 1/2 hour - it's basically outpatient therapy with the school speech path.  We are working with the same one who worked with Conner only 2 years ago with tremendous success, so we anticipated a great experience.  However, this is far from our current reality.

This summer we received therapy at an amazing private center.  The Center for Childhood Development is located in Jenison (only 5 minutes from our house!) and provided me with an opportunity to see how Jordan should be treated - as a whole being.  Instead of separating all types of therapy, she received physical, occupational, speech and sensory therapy all together and LOVED it!!!!   Jordan made AMAZING progress and began using new words and sounds.  We even heard her start to babble during imaginary play!!  It was so reassuring to see that Jordan could make such progress in such a positive environment.

There was only one problem...cost.  We paid, on average, $110 per week for Jordan's therapy.  That doesn't include evaluations, special therapy sessions, and the headphones we purchased for listening therapy.  Well, I submitted the paperwork to our insurance in the beginning of August to see if they would cover any of her therapy...and I am still fighting them!!  Last week, I received a request to show a medical diagnosis, any previous treatment received, and the reason for referral for therapy.  CAN YOU BELIEVE THIS?!?!?!?!?  After 3 years of doctors appointments, evaluations, tests, labs, and therapy, they want to know why????

Unfortunately, this is putting a delay on treating Jordan in the way she deserves to be treated.  We are keeping her in the school therapy, although she is having major temper tantrums at every session because she doesn't want to do what they are making her do!  Their recommendation is to put her in the classroom so that she will do what the other kids do!  Seriously?!?!  My daughter has made incredible progress in the past 3 years in all areas except speech and swallowing because of her strong will and determination...and now they want to her to follow what others do?!?!  They have offered to drop her to only 2 days a week, put her in the other school (since one teacher rejected her), have her in a smaller class size, still meet with the therapist one-on-one for both of those days...everything.  However, I just don't think their approach works for my little girl.

All I want is for our insurance to cover 80% of private therapy so I can help my daughter learn to speak in a non-threatening, positive environment.  Is that too much to ask?!?!?!?

Please pray that Derrick and I can receive wisdom on the best direction for Jordan.   I love my baby girl with all my heart and it breaks when I can't give her what she needs.

Seriously Too Busy to Keep Up!!!

Okay, so I am really depressed when I look and realize it has been almost 5 months since I have updated this blog!!!  I wish I had some grand excuse...but I don't.  I have had an amazing summer with my kids!!  Lots of backyard and pool time and trips to our CSA farm (more about that later.)  I feel as though I live in a time warp!!  This fall, I started homeschooling Conner and that has, again, increased my workload as a mom...but I love it and wouldn't change it for the world!!!

I have so much to share on Jordan's progress, but unfortunately, I am going to have to do that later.  I am actually just updating to commit to myself that I MUST make this a priority!!!  I hope to update 1-2 times a month...I know, pretty lame for a blog.  It is however, more to keep myself documented on her progress as I have no baby book for her and use this as my guide...remember, she's my 3rd and just doesn't get the stuff that comes along with being born early in the birth order!

So, if anyone reads this, please remind me to post something soon!!!  My facebook page is the most likely place for me to read it!!  Keep on me...so I don't slack again!!!!!

Catching Up

I feel as though the past few months have been so crazy busy and life has been a complete whirlwind!  I wish I could find time to sit and read, blog, or even take an occasional nap!  I am starting to see a light at the end of the tunnel as school is coming to a close.  Conner graduated from Maple Tree Preschool only a week and a half ago and Jordan's therapy is now on summer schedule (only 2x per month instead of 2x per week) and Mak has three 1/2 days of finals and then is done!!  I already feel as though the hurried pace of life is slowing down and I can enjoy my kids more and do the things I enjoy.

I have several things that I want to blog about and update everyone on and plan to work through them over the next week or so.  I know that some of these things are old news, but I want to be sure they are documented as I use this blog as a sort of 'baby book' for Jordan to track her progress and experiences.

Diagnosis...WORDS!!!!!

About 2 months ago, I became obsessed about a diagnosis for Jordan's inability to speak while reading a book called "Schuyler's Monster: A Father's Journey with his Wordless Daughter" by Robert Rummel-Hudson.  She seemed to be a normally developing child with a speech delay until at around age 3, she was diagnosed with polymicrogyria.  Yes, that is a big word.  But even bigger is the fact that this debilitating condition of the brain has left Schuyler with the inability to speak...forever.  It is a malformation in the brain that prevents people from being able to form words and speak.  I was drawn in by the book and then found his blog and then videos on You-tube.  I couldn't get enough information about this condition.  After all, I had a 2 1/2 year old who was also, for the most part, wordless.  We had heard an occasional word from her, but mostly she didn't even try to speak.  She definitely made a lot of noise, but there were only about 4-5 words that people could actually understand.  Could Jordan be wordless...forever?!?

I found several websites explaining polymicrogyria and the various symptoms that can be displayed with the diagnosis.  Jordan fit too many for me to push it aside.  However, I just couldn't find enough strength in myself to call the Dr. to see if they could read her MRI again to see if she could possibly have this extremely rare condition.  One of the websites explained that the condition is so rare and actually difficult to see in an MRI, that unless they are looking for it, it could easily be overlooked.  When Jordan had her MRI done, it was to look for cerebral palsy, not pmg.

I watched videos of Schuyler at approximately Jordan's age and could not believe how much I saw my own daughter in those images.  Running around, playing, laughing, exploring her world, making sounds...but no words.  I gradually started to watch more recent videos of Schuyler and found one that showed her at around the age of 9 or 10 reading a book.  I was mesmerized by watching Schuyler's lips.  Although, she was saying words by moving her tongue in her mouth, her lips remained open.  However, when she was not attempting to speak, her lips would close normally.  This was HUGE for me!!  Jordan does move her lips when making sounds (trying to speak) but the sounds just aren't coming together to form words.

Somehow, this gave me the ability to move on from my near obsession with Schuyler, Polymicrogyria, and Augmentative and Alternative Communication devices.  I was able to see that even if Jordan has some diagnosis that finds her unable to speak as clearly as the average person, or even if she is not speaking for several years to come, or maybe she never is able to put together more than a few words so that others can understand, it makes no difference how I feel about her or what I am currently doing to try to encourage and develop language in her.  I realized that Jordan is who God created her to be and I love her exactly how she is.

Fast forward to her surgery about 3 weeks ago.  After a week or so of feeling pretty out of it and needing LOTS of cuddle time, Jordan started getting back to normal.  A few weeks before her surgery we had started Jordan watching "Signing Time" videos during her 3 feedings during the day when she is in her feeding chair and watching videos.  About this same time, we started seeing her using the signs during the videos and even occasionally at other times.  It was awesome to see her signing!!!  Although she still didn't seem to understand that signing and language could communicate, it was great to see her imitating it.  She also started making animal sounds when we would read a book or watch a video with animals.

Then in the past 2 weeks, Jordan has shown AMAZING progress!!!!  She is signing and using words in everyday interactions with us!!!  Yes, Jordan is COMMUNICATING!!!!!  She has started to understand that if she says or signs something, she will get what she wants.  It was like a HUGE lightbulb went off inside her head and now all of the things she has been able to hear and understand, she is starting to use with us to communicate.  When I change her diaper and say "wet", she responds with "et."  When I ask her if she wants "up", she responds with "bup."  But the most amazing thing to hear is "daddy!!!"  All day long, wherever she is, she is always saying "daddy!!" 

I feel as though I have witnessed a miracle in my own life!  My wordless daughter has started to speak!!!  I am guessing that she has 20 clearly pronounced words and probably 20 more approximations.  It is amazing to me to watch my little Jordan blossom!  I feel as though God has given me a glimmer of hope when I was feeling as though things had gotten stagnant with her progress.  When she was discharged from feeding therapy in December and they said they would see her back in a year, I felt as though time had stopped.  There was nothing I could do to help my baby girl move forward in her biggest challenge, eating.  Although, we were seeing a speech path and receiving therapy, I didn't necessarily see anything happening.  I just kept blaming her poor oral motor skills. 

Well, now my baby girl is talking and developing those oral motor skills and I feel so much more encouraged that by the time of her next swallow study in December/January, she just might have something amazing to show Jenny and Ellen at Mary Free Bed!!!

Jordan's Surgery

Yesterday Jordan had a Tonsillectomy, Adenoidectomy, Microlaryngoscopy and Brochoscopy!!  We knew that her tonsils were quite large and almost touching in the back of her throat and the ENT said that her adenoids were also large and it was a good thing to get them out now since she's not in any feeding therapy program.  The scopes were an opportunity to see if there was an anatomical difference that could be causing her to aspirate or have difficulty swallowing.  There was nothing found that would be causing problems so we continue to see her complications related to her lack of oral motor skills and dysphagia.  However, the scopes did show that Jordan has some damage to her esophagus all the way up past her vocal chords due to reflux.

A year and a half ago, when Jordan had her G-tube placed, they also performed a Nissen Fundoplication.  This procedure essentially takes the top portion of the stomach and wraps it around the bottom of the esophagus forming a one-way valve.  The result is that food can go into her stomach but that it blocks stomach contents from coming back up.  It also won't allow her to vomit or burp or anything.  The winter following her Nissen, she was sick quite often and although the first several times, she was only wretching and gagging, eventually she was able to fully vomit.  Then last summer during feeding therapy it was noted that she was able to burp and we even noticed reflux a few times.  We just had no idea how much reflux she was having and the damage it was causing...but now we do.

Jordan's stay at the hospital was fairly uneventful.  After her surgery, she was admitted to the Pediatric Intensive Care Unit.  Although she probably would have been fine in the general peds unit, due to her history of aspiration, her ENT was being overly careful.  The nurses were all great and we felt that she was well cared for during her stay.  The only complaint I have of the entire hospital stay was the bed I was expected to sleep on was HORRIBLE!!!!  The nurse ended up bringing me a couple of extra pillows and I layed them on the mattress and slept on them!!  Well, I use the word "slept" very lightly since Jordan only slept in short segments all night.  I don't think she ever slept over an hour and so I was up frequently to console her, cuddle her, change her diaper, or get her more meds.  It was great when the ENT stopped by for rounds at 6:30 am and filed discharge paperwork so we could get home early!!  By 9:30 we were in the van on the way home!

She played around the house for an hour or so and then after her 11am feeding, she and I both took a nice, long nap!!  This afternoon she was very cuddly, but also enjoyed some time running around and playing.  After her bath tonight she cuddled up with me on the bed and fell asleep.  I'm hoping that as long as I keep her comfortable with her pain meds, she should sleep quite well tonight.

Today after we got home from the hospital I called Jordan's Neurodevelopmental Specialist who originally ordered the G-tube/Nissen to see what they want to do following the information we learned yesterday.  I am waiting to hear back from them.  I'm assuming they will start her on some meds right away and then I requested a consult with a gastroenterologist to evaluate her digestive situation before just going back in and redoing the Nissen.

Surgery - Tonsillectomy, Adenoidectomy, Microlaryngoscopy and Brochoscopy

A few months ago, Jordan was evaluated by an Ear, Nose and Throat specialist and it was determined that she needed surgery.  She is scheduled for Monday, February 22 at 9:45am.  We are less than 2 days away and I am preparing myself physically, mentally, and spiritually for all that it entails.  The procedures are considered outpatient (for insurance reasons) but then she will be admitted to the Pediatric Intensive Care Unit at DeVos Children's Hospital for a minimum of 24 hours.  I am trying to process through all of what is going to happen.

The ENT found that her tonsils are almost touching in the back of her throat and need to be removed in hopes to provide a clear path for her swallowing in the future.  It's kinda funny because about 6 months ago, I called the peds office because during one of her screaming episodes, I saw how huge her tonsils looked and they told me that unless they were red and inflamed or she was showing signs of discomfort, large tonsils are common with young children.  I guess they are larger than they should be so out they go!!!  It is fairly common practice to remove the adenoids when they remove the tonsils so she is having that done as well.  The other procedures are scopes they are doing in order to see what her esophagus and trachea area look like.  They are looking for damage from reflux as well as any malformations that may be causing the difficulty swallowing and/or the aspiration.

The Tonsillectomy and Adenoidectomy, or T & A as the medical people refer to it, is a very standard and common procedure so we feel confident that this will benefit her in the long run and hopefully make it somewhat easier for her to swallow.  The doctor was very glad that Jordan was not currently in a treatment program for swallowing as the surgery could be a significant setback.  As frustrated and disappointed as I was that they were stopping feeding therapy for a year, it might be the best opportunity for us to take care of some of these other obstacles that stand in her way for swallowing.

The Microlaryngoscopy and Brochoscopy are the procedures we are more anxious about.  They will use a scope to look at her vocal chords and airway.  There is a huge part of me that is hoping they find some malformation that can be repaired and hopefully increase her chances of effective swallowing without aspiration.  I know it seems crazy to want them to find something, but since we have spent almost 2 years trying to figure out why she can't swallow and getting her to try to learn with no success, I just want to fix it for her!!  I am also preparing myself to hear that everything looks normal and that we are no closer to a solution than we were before.  It's hard sometimes to not get my hopes up, but I have to in order to avoid heartbreak and disappointment in the long run.

My biggest concern is that they told me she will be miserable for 2 weeks!!!  That's a long time with a little one!!  I know that I have heard so much about how people say Popsicles and ice cream and cold foods in general feel so good on their throat when they have their tonsils out.  Unfortunately, Jordan is NPO (nothing by mouth) and therefore can't enjoy any of the things that are often used to help soothe the sore throat.  I will have her cold, thickened water available, but she is not supposed to have large amounts of it - only small sips.  Hopefully, they will be generous with her pain meds to get her through the worst of it.

I'm sure Jordan will be strong, just as she always is; I'm just praying that I can be as strong as she is.  I was supposed to go on a winter retreat with our youth group this weekend while Conner and Jordan stayed with some relatives.  However, on Thursday night I completely fell apart and could not find the strength to leave Jordan!  Partly, because they had not babysat her before and there is so much information to cover with daily routines but also because of the possibility of something going wrong and I'm not there to take care of her.  With her surgery the day after I was to return, I was just overwhelmed with the emotions of leaving her.  I was disappointed that I wasn't able to have fun on the retreat with Derrick, Mak and the kids from church, but I am thankful to have this weekend to spend with my little's!!

Delinquent Blogger Update

I feel like I have been a delinquent blogger lately. There has been so much going on and so much I want to share, but I never seem to find the time to sit and write it all out. I do think that posting little status updates on Facebook seems to have replaced some of my fuller blog entries. Unfortunately, those are so short, they don't always tell the whole story.

Christmas morning, Jordan received a Jump-O-Lene!! This is an inflatable trampoline measuring 8 feet across. We had to move some toys out of the basement and rearrange things to make it fit, but it's a great addition to our playroom!! It's a great way for Jordan and Conner to both get their exercise! Therapeutically, it's great for Jordan to work on her core strength and balance and well as her sensory stimulation.




Since Derrick and I spent last fall attending a class called It Takes Two to Talk to help us learn how to work with Jordan to encourage communication, she was not in a group class. However, in January she started in the toddler class. The first class was a complete disaster - she cried during every transition!!! They did some fun stuff with the kids - they brought in bins full of snow and let them dig in it with shovels!! I really need to do this with the kids here at home - what a great way for them to play in the snow without having to bundle up and go out into it! Since then, Jordan has done great in the class and we love it!! There is talk of them starting a speech/language class so we are currently waiting to hear when that will start.

Jordan had her calories increased in November after her appointment at the Gerber Center because they didn't think she was gaining weight fast enough (1 pound in 6 months). After 2 months at the increased calories, she was gaining a pound a month!!!! They agreed that this was much too fast as it put her over the 50th percentile for her body mass!! They decreased her calories (although they were slightly above what they had been before) and after a month she is gaining slowly. She is now up to 23 lbs. 15 oz - almost 24 lbs!!!!

Jordan still has a tendency to put all sorts of things in her mouth - particularly small things she finds laying around (crumbs on the table, stickers Conner has put on things, etc...) In the end of January, we had a big scare with Jordan! She was up in Conner's room playing while I made lunch when I heard her start gagging. I ran up and found her standing there with a mouthful of white paste. I realized that she had taken a bite of sidewalk chalk and had chewed it up and now had no idea what to do with it!! I grabbed her and ran down the stairs while sweeping her mouth and then rinsing it out with water. She was still gagging and so I dialed 911. While on the phone with them, she cleared most of what was obstructing her breathing and I gave her some sips of her thickened water. She seemed okay so they never dispatched anyone. However, we then had to face the possibility that she may have aspirated some of the chalk so I made a call to poison control to talk with them about the signs to watch for. She seemed fine at that point and never did show any complications but it was a HUGE wake-up call for me!!! I have been trying to be diligent about watching her and keeping things out of reach that are not safe for her. Unfortunately, with a 4 year old in the house, sometimes things get left out. We are all working hard on this.

This event was extremely emotional for me! Not only was the concern for Jordan's safety a major part, I had to once again face the fact that my baby girl just can't do things like most kids her age. At 2 1/2 I am still worrying about her putting things in her mouth the way a 6 month old does. We don't know how long she will continue to put things in her mouth and we don't know if at any point she will learn to swallow so that even if the things are in her mouth, at least she will not gag on them. It makes me sad to see her strong desire to be oral and yet have to constantly tell her "not in!" We know that she has some understanding of this and yet sometimes she is just curious and sometimes she is a defiant 2 year old!! My prayer is that she will come to an understanding and acceptance that she cannot put things in her mouth. However, I don't want this to create an oral aversion so that when she is capable of swallowing she won't put things in her mouth (at least the food we want her to!)

Last week Jordan went to Mary Free Bed to be evaluated for new thumb splints. She had received some neoprene ones through Ken-O-Sha last fall, but the Occupational Therapist at the Gerber Center thought she might benefit from some with hard plastic supports to stabilize the thumbs more effectively. The therapists evaluating her were amazed at how unstable her thumbs were! They are constantly hyper-extending backwards but she doesn't bend her thumb to compensate for it's position so they end up just looking weird!! The discussed several options and narrowed it down to 2 designs that they thought would work best for her. One was a very simple design and they made it and fit it right there. It is a white hard material that circles her thumb and part way across her palm and then has a strip that wraps around the back of her hand and connects with a neoprene velcro strap to the part on the palm. Due to the extreme malformation of her right thumb they almost splint the entire thumb in order to stabilize it. The left one is a bit more open for movement. Jordan has done pretty well with them, but she takes them off quite a bit more than the previous ones. I suspect that they aren't very comfortable and since she can't move them and many fine motor tasks are quite difficult, she would rather go without them. The second design is on order and should be in sometime next week. We will go in and have them form the hard part around her thumb, but the majority of the splint is neoprene and should be much more comfortable for her. We had fun picking out colors!!! At first, I avoided the bright pink because it was so bright, but then when I showed her the options, it was the one she picked out. However, after remembering how dirty her tan one got, I decided that it would look awful if her bright pink splint was covered with dirty spots so we settled for a dark purple :)

Well, that pretty much gets everything up to date!! I will post more later on her upcoming surgery.