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First Week Home

We have just finished Kae-Kae’s first week at home and I wanted to give the highlights. First of all, it was GREAT! The only time she dissociated was when she had her first counseling session. Otherwise, there has been only one other time this week when I could tell from her body language that I was about to “lose” her. We were doing science that had a lot of cutting, glueing and noise from her siblings. I think she did not understand what she was supposed to be doing, so it was extra stressful for her. Needless to say, I am putting that curriculum on hold.

Some wonderful things she did this week involved going to worship and Sunday school, trying out for a children’s choir, going to a sewing class, going to a food preservation class with the women from our church, doing 5 minute math drills, working on French, choosing to start a Latin class and playing her flute again.  Of course, all of the activities she is doing on her own are at a very compromised pace and she only can do about 15 minutes toward them, but slow and steady wins the race. 

Some of her struggles are reading, she was able to read 5 pages of Little Britches yesterday, which is the most she has been able to read in one setting.  She can not write more than one word, I think it takes so much focus for her.  She is not able to cut with scissors.  Her vision is still giving her very obvious problems, she could not see to stir up all the muffin mix, so there was raw egg that cooked on the top of the muffins.  Another example is that she can not see that the dishes are still dirty after she washes them.  I don’t know how we are going to address the vision issues, since vision therapy seemed to be the thing that pushed her over.  We are praying for wisdom on the what and when in order to help her. 

Kae-Kae was to begin Omnibus 2 this fall, but she is folding in with the littles as we do Mystery of History Vol. 2. She is able to follow the read aloud time better. I still don’t have a math or spelling plan, and she is not doing any writing, but I think it will be soon that she can go back to the Institute for Excellence in Writing. Science is another subject I can not figure out how to get her to do, since I have no more time for one-on-one with her, and she has severe anxiety about any science other than just reading from a book.

Interestingly, Kae-Kae has asked us to move the futon out to the garage, so she can put up the craft table.  She wants it to sew on since she is in her sewing class.  She has also decided it would be a good place to do her schoolwork in peace and quiet.  The table would be in our bedroom.  We plan to move the futon TODAY!

Big News

I am a bit behind on this important report because of our move.  But, we are here and have Internet service, which we all know is more important than finding the pots and pans!

On Sunday, Kae-Kae came out from under the futon at 3:30! She was very jumpy and pacing alot, but she came out.  Everyday this week she has come out earlier and earlier.  She started out being mute for several hours, and as of this morning, Wednesday, she only spent 20 minutes under the futon and started talking by 9:30AM.  Apparently, she came around the corner and gave my dad a heart attack by asking, “Poppie,  what are we going to do today?”

I am now trying to gather some homeschool books and DVDs to send her so she won’t be bored.  We have only been on this tranquilizer for 6 days, and that combined with anti-psychotic has made all the difference.  All of my children here are anxious to see Kae-Kae up and talking, and I don’t know if we will be able to hold off until next weekend!

We are praising the Lord for these changes and are looking for the grace and wisdom to continue to help her adapt to her new life in our small town, at the church she grew up in, and what school should look like for her this fall.  We are also facing the transition of her medicine from the tranquilizer to a more common medication for anxiety.

I will continue to post updates as she continues to improve.

Kae-Kae’s Second Week

We are nearing the end of the second week of Kae-Kae’s time on her first anti-psychotic.  Overall it has been a good experience, with only one negative side effect that was able to be quickly be fixed.  On the second night of her full dosage (it took about 5 days to build up), she had slurred speech and could not keep her head up.  The doctor adjusted the medicine to let her take it all at night when she went to bed.  The time of dosage is not as critical as with other medicines. 

I wish I could report more positive improvements, though.  I can say we are seeing steady changes, but they are very s-l-o-w.  She has been at my parents all week and had to come home for about 24 hours for us to take her to the psychiatrist.  While home she heard me two different times.  Although, it was NOT pretty. 

The first time she had come to get her breakfast and had her quilt wrapped around her.  I realized she did not have her sweatshirt to put on and I ran and brought it to her.  She had the pantry open looking at it trying to find her granola.  I told her I had her shirt.  She stood there for about 2 minutes and then shuffled to her bedroom.  I laid the shirt on her bed.  She buried her face in her blanket for about 20 minutes before she could work up the nerve to get the shirt on. 

The second time is when she had gone to the bathroom to get her shower.  We only had 5 minutes before we needed to leave to get to the doctor (remember, I pay him $100 for 30 minutes, so we are not going to be late).  I stood outside the door and called to her and knocked for about 3 minutes, and she came out.  I blocked her way into the futon and she turned around and went to the car.  We did make it to the doctor on time, but without her shoes.  Agh!

The doctor upped her anti-psychotic and also prescribed a tranquilizer.  I can tell you reading about the side effects of this tranquilizer will give you a migraine.  This is where I am having to really trust God’s working through our psychiatrist to give her the right meds at the right time.  He put her on this tranquilizer in order to try to cause an immediate calming to her anxiety.  The family of meds like Paxil takes about 8 weeks to fully get into your system and we don’t have 8 weeks.  Remember, Kae-Kae has now been under the futon for a full 8 weeks. 

We talked with Kae-Kae last night and she was alert and talkative as normal, in the evening.  She has no memory of the day, and does not remember that Dan had to carry her to the car to go back to Alabama or about the doctor visit.  I kind of wish mom and dad could have that kind of amnesia!

While at Nana and Poppie’s “all inclusive resort,” she has been able to swim, take nightly walks, work puzzles, learn how to work her new computer that she got from them, get her own email address and learn to use it, make phone calls, and watch Food Network.  She is spending less time on the computer in the evenings doing that meditation thing, so she is getting more social time, too.  They are on Central time, so she is now coming out around 8pm, and they are staying up until midnight with her. 

Specific prayer requests:

  1. We move Monday back to our small town, and we need energy and motivation to get this done.  Also, we need money and energy to begin working on the garage to renovate it into a bedroom and rec room area for Kae-Kae, as soon as possible. 
  2. For the adjustment of all my family to our new town, new-old house (that is what they call it) and church.  Also, I have tenative plans to begin school August 9, just because Joy-bug is already on lesson 9 of her Math.  These people are serious about their learning, and I am serious about keeping them entertained.  They think school is entertainment. 
  3. Dan and I have a parent meeting this week with the counselor we have chosen.  She is a play therapist that is very affordable and is in the closest city to where we live.  She is also on the Crisis Pregnancy Board for her town, so we are sure that means she is a Christian. 
  4. That Kae-Kae will be able to hear, see and speak during daytime hours.
  5. For wisdom on if the tranquilizer needs to be at a full or half dosage.   
  6. For endurance and wisdom for my parents as they are the full-time caregivers for Kae-Kae.  I know how tedious this can be, however the benefits of seeing her smile and laugh at night are all worth it!!

First Week of Medication

I wanted to give a quick update on Kae-Kae and her response to the medicine.  The first improvement we noticed was after the third day of medication.  We have been seeing slow changes since then.  For instance, she has reduced her nighttime computer time to 1 hour and 30minutes.  This computer time is actually encouraged by the psychiatrist, who said that research has been done to show that certain games promote a type of meditation that she would not be able to bring on her own.

Another improvement is that today, when my dad asked her to not take another bite of food until he gave her her medicene, she stopped and took it!  We are doing the happy dance here!

One thing that you may have missed is that Kae-Kae is on an “all-inclusive” resort stay at her grandparent’s house, until further notice.  This allows our family to have a short vacation and to get moved and settled.  They are carefully monitoring and observing her and all the changes.  Kae-Kae does have an appointment with the psychiatrist this Friday, and he is expecting her to be speaking to him.  I pray that is the Lord’s will.

Dissociative Anxiety Disorder-N.O.S.

Our psychiatrist made his first house call last night and came to visit Kae-Kae while she was alert and talkative. She was talkative for about 5 minutes, until the conversation was turned to topics she found difficult to answer. Here are some examples:

  1. Do you feel happy, sad or angry?
  2. Do you feel like you have ever lost time before where you have not know what is happening around you?
  3. Do you remember swinging today?

Her answer for all of these was, “I don’t know.”  I could see we were beginning to lose her, and then he asked, “What game did you play with your parents last night?  and “Who is your best friend?” 

The answers to those questions were, “I don’t know.”  Then she stopped answering/hearing/seeing/responding.  This is the part he calls the dissociative part.  This is why she does not remember anything that happens in the day. 

So, we have some medicine, and we were able to get it approved by our insurance this morning.  She had her first dose, and we will see what happens.  It will work on the anxiety in a few days and the dissociative part in 7-10 days. 

The little issue about the N.O.S.= Not Otherwise Specified,  is the part that means the doctor does NOT REALLY KNOW WHAT THIS IS.  He has seen parts of these issues before, but never in this make-up.  This is the part where we go in for another visit with him in 10 days to see if he can get Kae-Kae to talk at all and maybe give us all more insight into more specifics of this disorder.  This does put us on the DSM-IV and is what makes our insurance consider putting this toward our deductible, but does not really help us as parents. 

So, now we wait and watch. 

Looking for any movement out from under the futon, or anything unusual she does.  Unusual at this point could mean eating something different for breakfast, reading, taking a walk, speaking, wearing a different outfit, coming up earlier at night, etc.

I am leaving you with this verse for the day that my friend April sent us:

“But forget all that – it is nothing compared to what I am going to do. For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers for them in the desert!”

Isaiah 43: 18-19 (NLT)

It was the best of times, it was the worst of times….

“All life comes from you, Lord to both great and small,
In all life you live Lord, the true life of all:
We blossom and flourish, but quickly grow frail,
We wither and perish, but you never fail.”

Verse 3, from the hymn, Your Great Name We Praise

The classics I have read over the last few weeks are A Tale of Two Cities and Jane Ere, both books having a character who struggled with some type of mental illness.  Mrs. Poole and Dr. Mannette offered plenty for me to chew on as we are awaiting the particulars of the mental illness my daughter has. 

As I have gone through this journey I have felt many emotions: numbness, anger, loss, loneliness, sadness, grieving, despair and even anguish.  I have learned several things about God and emotions through this. 

1.  Sadness and grief are not the same thing.

2.  One can go from despair to anguish of spirit. 

However, I also have learned more about the Psalms than I ever understood before.  I have learned how cynical I am to God’s movement and plans, and can see what idolatry and assumption is in how I normally live my life.  The word presumption also has taken on new meaning.   I see much more of my arrogance in how “I” live life and “my” choices. 

Yuck!

But, the Lord is growing me and my faith daily. 

So, that is what is going on in my world, now to the update on Kae-Kae.

Dan and I met with the psychiatrist yesterday and it went well.  We don’t have a plan or diagnosis, but to find a doctor who says, “I can help here,” is remarkable.  You have to remember that is is 7 weeks ago today that she went under the futon.  Dr. Gass will be coming to our home tomorrow night at 10:00pm to meet with Kae-Kae.  He will be making his first house call EVER!  He wants to see her and talk to her when she is coherent, so as to get a better picture of what type of phobia or anxiety this is.  Praise God for this doctor.  He has a hypothesis right now, which does involve some serious medications, but he did say it may take just small doses of them to help her. 

The other profound thing that Dr. Gass said is, he does NOT think Kae-Kae has autism.  I know this is  a relief for more than just me, since everyone who has known her over the last 9 years is racking their brains trying to figure out how she could have autism.  Remember her playing “Puck,” in A Midsummer Night’s Dream, along with all the ballet, flute and piano recitals?  Also, her smile and eye contact that she always has had?  He thinks this paranoia/anxiety has been going on A LONG TIME, and is actually what has “caused” her learning disabilities.  He thinks once we can treat the psychiatric part, that she will begin learning again.  Obviously, we have years of remedial work to tackle, but there is hope. 

So, here are the prayer requests for our family:

  1. The psychiatrist will have great wisdom in the best medication for Kae-Kae.
  2. The meds will have NO negative side effects (God can do that, you know).
  3. We can pack and get moved and take care of her in a way that does not push her too far emotionally.  We move in 2 weeks and not a thing has been packed.
  4. Wisdom and money for whatever type schooling we choose for her for the fall.  We are looking at a Christian school that I REALLY like, but will not take her if she is not psychologically stable, and it may just aggrevate her anxiety since it is fairly large and far away from home.    The school that will take her, I don’t really want her to go to- it costs 25% of Dan’s salary for the year and has kids who have worse learning issues combined with many behavioral issues, but they are willing to work with Kae-Kae’s psychiatric issues. 
  5. Confirmation that the therapist/counselor we have chosen is the best for Kae-Kae and our family. 

I thought I would leave you with this picture of Kae-Kae.  This is what we see all day every day, unless she is swinging for a few hours.

Our Visit to the Neurologist

Today we went to the most recommended child neurologist in our city.  And the prognosis is…

No Clue, Nada, Nothing…..

She said she has only seen one case of something that looked somewhat like this in a woman with a one-year prison sentence.  She would wake up at 7am and go stand in the corner until 10pm, until she was escorted back to her bed by a jailer.  She was released from prison and they decided it was severe depression.

So, our neurologist feels this is some sort of extreme anxiety and/or depression.  She did not want to give us any medication because she wanted the psychiatrist to be able to see Kae-Kae at her “best.”  So, in a week, Dan and I have our meeting with the psychiatrist.  Then 2 weeks after that, Kae-Kae goes in.

This is the third doctor who has said that only the psychiatrist can help us.  I hope he can, since he is the last doctor in our doctor line up.  If he can’t figure it out, we are back to square one.  The neurologist also said she does feel that Kae-Kae is on the Autism spectrum.  So, as homeschool mom/parent I am going to continue to pursue the autism issues on my own (with a kick in the pants from my friend,  April). 

Specific prayers for our family:

  • ability to stay awake LATE at night and do something with Kae-Kae.  We are going to begin reading The Hobbit outloud to her, play games, and watch videos with her.  The last three weeks, we just stay up long enough to watch her eat and do her Brain Gym, so she is only around people 45 min a day. 
  • the psychiatrist will have mercy on us and move Kae-Kae’s appointment sooner after he meets with her distraught parents. 
  • for our move back home to our small town.  Several doctors feel this will be a positive change for Kae-Kae since it is familiar with her old house, friends, church, etc.  Two doctors also think there may be some type of toxin in the house we are in now.   However, we have to GET her there, along with a household of stuff and 3 other children.

I would like to leave you with a link from one of my favorite bloggy friends, Kathleen, and her take on Gratituesday.  Click here to read the whole post.  But, I wanted to lift this quote in which she so eloquently explains about  the fragility of our lives as we rest in God’s lovingkindness.   

“I know that one diagnosis, one accident, one little moment in time can change all of this, that life as I know it now could be gone forever.

And I’d have to learn to love a new normal, to accept the Acts of God, to learn peace and contentment when I don’t have what I wanted in life.”

This is where I am living.

Peace to you,

Today's Experience

I have to say that our appointment with the Developmental Pediatrician went well. For the second time, we had a doctor who wanted to help, but she could not. So, the referrals began. She stated we are in a crisis situation, and need immediate intervention. There is no doubt about that.

So, we were referred to the local psychiatric hospital. We were told it was to be evaluated for either in-patient or out-patient services. Our understanding of services and theirs were very different. We thought it meant putting Kae-Kae in to observer her, and seeing a psychiatrist with a little counseling. Their idea was bring her in for a while, and try to get her talking in groups, and eventually seeing a doctor sometime. From the minute we walked in, things were going down hill. However, the climax was when the social worker, who was conducting our interview (that is right, no psychiatric type person) asked, “How much parental involvement do you want to have while your daughter is here?”

Obviously, she has not met a homeschool mom.

End of sentence.

We prayed hard, smiled and nodded our heads alot. And got the heck out of dodge. WITH OUR DAUGHTER!

So, we are back to square one. The added knowledge we have is that Kae-Kae does qualify for an indefinite stay at an inpatient mental hospital. However, we still have not seen any of that kind of doctor, which is who I want to see before anything this dramatic happens. Especially since my daughter would be in a semi-private room with two other girls who are 13-18 years old who are mostly “system” kids. That hospital does not know about our time as houseparents. I know what 13-18 year old girls stuck in the system look like.

The good news is, I think, that about 10 minutes after we were speeding away from The Horrible Place, our doctor from this morning called. She was appalled by what had happened, and apologized, and is getting us into a clinical psychologist within 2 days. Again, I am not really sure how this helps things, but it is nice to have a doctor on our side. The other thing that happened is we called the psychiatrist Kae-Kae has an appointment with in six weeks, and Dan grovelled and pleaded on the answering machine for him to see us sooner. He has gotten the best recommendation of all of them locally, so we are praying he will help us sooner rather than later.

We do hope to pick up our little people today.  It will make caring for Kae-Kae more complex, but they need to come home.  This is the longest I have ever been away from them, and it is important for us all to know we are a team and we are fighting together.  I don’t want my children to forget each other.  We do tell Kae-Kae all the stories from the day, so she still feels connected with the littles.  It is harder for them to feel connected, since it is so abstract.  Kae-Kae comes up after they are asleep.  They have not seen her upright and semi-engaged since June 5.

Thank you for praying.

Another update...

It is hard to have nifty titles when life is basically the same from week to week.  I am doing some lesson planning for the fall and even purchasing Kae-Kae’s schoolbooks, in faith that she will be at a point to use them.  Maybe soon I will do the BIG REVEAL on our choices for 2010-2011.

For now, I did want to report on our pediatrician visit last week.  Remember, we fired our last one, so we needed a new primary care since EVERYTHING we do now requires a referral.  This doctor sees many patients who are on the spectrum and also is very skilled at referrals, since he does see alot of atypical kids.  So here is his verdict, remember he is not a specialist….

“She has a tremendous psychological problem.”

Good to get that off my chest.  You never think your kids might need a psychiatrist, and that is exactly who we are being referred to.   I actually have had to figure out the difference between a psychiatrist and psychologist.  We already have been working with a neuropsychologist, so I had kind of figured that part out. 

Our developmental pediatrician appointment is this Monday, so hopefully we will get a second opinion about that and see what a different doctor has to say .  However, you have to remember all of the therapies we have done have overstressed Kae-Kae, even though every doctor has told us it should not happen.  We stopped all therapy on April 29.  So, we are gun-shy about therapy.  As for medications, there is a BIG chance she will be put on some type of anti-anxiety meds, since some schools of thought are that is where the selective mutism is coming from.   There is the other school of thought that the mutism is coming from non-integrated reflexes (that is where Dan & I stand).

So, when you think about your child having some sort of psychosis, you have extreme guilt.  You replay every event, school situation, curricular choice, extra-curricular change or  move.  What part of Dan and I, in our life as parents and sinful people, could have been the thing that tipped the boat?  Is there anything we can “fix” that could bring Kae-Kae back?    I could write five blogs about all God is teaching us through this trial.  I could write five more blogs about all God is convicting us about in our pride, selfishness, arrogance and how we have lived life up to this point.  Click here to see a previous confession along the same vein.

So if you would like some prayer points:

  • Clarity for the doctor and our appointment on Monday with the Developmental Pediatrician.  Also a doctor that will work to try to get to the bottom of this.   Also, that she will be compliant while there.  For the first time in my life, my compliant child refused to do what the doctor wanted. 
  • We are being told for these unintegrated primitive reflexes, OT can actually aggravate them, and that PT is the way to start.  We need huge wisdom for that.  We know little about all this. 
  • The MRI got moved to tomorrow, Wednesday, so prayer that we can get Kae-Kae there.  She has not left the house in six days. 
  • That she can begin to read again.  It has been 10 days since she read.  She now stares at a point on the carpet for about 8 hours a day, until she moves to the computer at about 7:45pm. 
  • Another life decision our family is making, which seems to be in the best interest of all of our family members, but that feels overwhelming right now, and has long-term ramifications.  I do not feel up to the task- it is physically and emotionally draining. 

I would like to recommend 2 books that are helping me right now, both are a comfort and conviction as we go through this trial.

If you purchase through my site I do recieve a tiny amount of money from Amazon since I referred you.

Living with Non-Integrated Fear Paralysis

Things heard or seen around my house this week:

 “We all named the yard bunny, Daisy, that was before Kae-Kae stopped talking.”

 Little Guy bashfully staring at Kae-Kae during breakfast, when he happened to be eating later than normal and she earlier than normal.  I then calculated they had not had a meal together for 6 weeks.

 Kae-Kae not eating a meal until between 9:30-11 pm, every night.

 There have been many things I have wanted to say on the blog or FB for the last several weeks, but I have not trusted myself.  The range of emotions have been vast and stormy, and my faith has been weak and ransacked.  Many times when I planned to write, I felt that I was just whining and complaining about the lot God has chosen for my family.  One of the largest struggles I have had has been reconciling God’s sovereignty, goodness and kindness with this horrible experience.  It is easy to say those words when life is grand or even a little bumpy, but now living through the greatest test and darkness that anyone in my family has lived, my faith has been tested.  Many days I cry all day, other days I am angry or just numb.  This week, I have had better days personally, but Dan has been feeling the loss and helplessness of our situation.  I have begun studying Job this week, truly grapping with the verse, “though he slay me, yet I will praise Him.” 

 Losing my daughter to this horrible disease or nonintegrated primitive reflexes or psychological problem or autism or unknown has been like losing an appendage.  The first few weeks I was selfish- upset because my home organization, chore list, and schedule were awry with each new issue Kae-Kae displayed.  The last few weeks I have been broken for my daughter, the daughter that I am now being told will never return as we knew her before.  When this started there were explanations from different therapists and doctors, and it was always that the “back to normal” was just around the corner.  Now, the understanding is that our family will be having to find a new normal.  Kae-Kae will be possibly limited the rest of her life in a way we could never conceive.  We live as if our daughter has developed Alzheimer’s disease and we can not go out unless we have a care-giver to stay with her.  We have to feed her and bring her water and watch to make sure she really drinks it.  Our other three children have not spoken to their sister in days, and they think that it is normal that one of their siblings does all of these bizarre behaviors.  They don’t talk to her or about her anymore.  She has become a piece of furniture to them.  Our family as we knew it is gone, and yet, God’s truth still has to remain true, but that does not remove the grief, mourning or loss. 

 Her EEG came back normal.  NORMAL!  How can a child who has zero quality of life and has been nowhere for a week (not even to church) or out of the basement can have a normal EEG, I will never know. 

 Some of you have wanted details of what Kae-Kae is doing daily.  Here is her schedule:

 Between 9:30-11 AM, get up (If I wake her up it sends her into active Fear Paralysis which means she stims, rocks and thumb sucks all day).  She eats a bowl of granola when she gets up, and showers.  AND GOES TO THE BASEMENT.  This is where she lives for the next 11-12 hours every day. 

That is it- no chores, no bed making, no clothes hanging, no teeth brushing, nothing else.  She is selectively mute (although it does not seem selective, she just can’t talk). 

The rest of the day is a combo of hiding under the futon cushions, rocking in the lazy-boy, jumping on the body ball or swinging. A “good” day usually means she was able to whisper to me, read a book or play chess on the computer.  That is it. The good part of the day always ends at 4pm, when she completely shuts down and literally can not hear or see anyone. 

9:30 PM –11 PM, Kae-Kae comes upstairs and eats dinner.  This is the only time of the day she is lucid and coherent.  Sometimes we play a game or she practices flute.  Then she goes to bed. 

 Our Brain Gym teacher comes about 2 times a week to our house and stays between 1.5–3 hours at a time.  This is a trying time for all of us, since the therapy is extremely intense and emotional.  I do not tell Kae-Kae she is coming until about 5 minutes before, since it sends her into fear paralysis. 

 Our upcoming week consists of a visit to a new pediatrician (our other one got fired for labeling Kae-Kae with rapidly degenerating autism, WHICH DOES NOT EXIST).  This pediatrician works with many children on the autism spectrum.  We hope to get into a different type of chiropractor that uses many alternative treatments to help kids on the spectrum and kids with extreme sensory integration disorder.  We still have two weeks until our visit with the Developmental Pediatrician who should give us some kind of label.  She can also give us a referral for OT which can work specifically on the sensory integration disorder.  This week every neighbor has been mowing their yard, and we observed the lawn mowing sends Kae-Kae into fear paralysis.  It took us a few days to figure out the trouble, and now she has Dan’s gun earmuffs to wear while she is under the futon cushions.  It is still a month until our visit at the neurologist, but I am skeptical that she is going to be that helpful, since our EEG is normal.

 Our whole family has been gluten free for about a week, we have been casein free for 6 months.  Gluten free is usually key for sensory integration and autistic kids.  We are hoping to see some improvements in the next week.  Surprisingly, all of the GFCF things I have made are really good, just really expensive.  I normally make dinner for $6 for our family and have leftovers.  Now, it costs $10-12 for dinner with no leftovers. 

 I have tried to figure out what the most annoying things are about this journey and I think I have them nailed down:

  •  The medical community moving so slow to get us in (we have a child who is NOT EATING FOR WEEKS NOW).
  • No doctors working out of their area to see if they could help us find a diagnosis or even other suggestions of types of doctors to see.
  • Not having a “quarterback” who can oversee all of our treatments and therapies and assure us that we are on the right track, even if it takes years to rebuild. 
  • Not being able to take care of my three kids and also take care of Kae-Kae.  It truly takes one parent for the three kids and household and one parent to take care of Kae-Kae and deal with doctors, phone calls and therapy visits. 
  • Life going on as usual, I still have children to help practice violin and teach to read, a boy to finish potty training, dinner has to be cooked and the house cleaned.  My life as I know it is dying and yet living is still going on around me.  I have to keep living and going for all of the other people in my world, even though I am losing my firstborn AND NO ONE CAN TELL ME WHY. 
  • In April, Kae-Kae saw the dentist and he said she was not going to need braces.  Now her front tooth is completely pushed over on the other due to the thumb sucking.  All parents assume if they dodge that bullet while their kids are under three, you win. 
  • Sadness, the death of dreams is always sad.

 If you have stuck through to the end and are still reading, thanks.  I am sure this post has raised many more questions than it has answered, but the problem is, I have no more answers.  Presently, I don’t even have any more stones to turn over.  If you have called or emailed and I have not responded, please forgive me for not responding.  Occasionally,  I have the time to call but not the heart.