Proscrastination...

I have had the same half dozen things at the top of my To Do List for weeks... maybe more like months. 

I guess I should explain a little bit.  When my husband worked for his parents' business he had a little more freedom and he was able to take care of most of the insurance and medical paperwork and phone calls, etc.  Well, since he has been at his current job for the past year he does not have the same flexibility he had before.  So, those responsibilities have fallen to me. I'll admit something to you all.  I have not risen to the occasion...  I have cowered.

As some of you may know dealing with Medicaid and Insurance and the medical community is not always sunshine and roses.  Often there is a lot of jumping through hoops and filing lots of paperwork and making lots of tedious phone calls to people who claim to know what they're talking about and are supposed to be there to help you but seem to be as tired and frustrated and ignorant as I do.  Some days I have felt crippled by the anxiety about the impending phone calls and necessary hoops I will inevitably be jumping through.  Taking care of this paperwork and faxing it to this person, who will send it to so-and-so who will be calling me back with questions... its mentally and emotionally exhausting just thinking about it.

So I kept put things off.  Among other things, several phone calls needed to be made to get Christine scheduled for outpatient therapy since she aged out of First Steps and cannot continue to get therapy through them.  But I've been frustrated and disappointed and disrespected so many times that I just did not want to deal with it.  I didn't want another person to treat me like I'm stupid, or tell me that this service or that service is not covered.  I just feel like those phone calls suck the life out of me.  It puts me in a bad place emotionally.  Frankly, it often puts me in pit of depression that it takes days (or weeks) to work my way out of.

At some point I finally accepted that I could not put these off any longer.  But I knew I needed a plan to take care of the phone calls without them getting the best of me.  So I came up with a few things to help me do my best.

- Prioritize - 
I sat down and figured out which items on my list were most important.  There were a couple that I was able to rule out as unnecessary or at least something that legitimately could be put off for a later date.  The ones that needed to be addressed right away I moved to the top of the list.

- Get Organized -
I created a list of the phone numbers that I would be needing to call so that I could tackle them all at once instead of having to scramble to find this number or that one in between each phone call.

- Write It Down -
One of the things that I was afraid of was not knowing what to say or forgetting something that I meant to ask, etc.  So I wrote down a series of questions that I needed answered.

- Get and Early Start -
There were many days when I would try to get up the nerve to tackle my call list all day and finally feel ready to do it late in the afternoon when it was really too late to accomplish the task since business hours often end between 4 and 5pm.  Then that would give me another reason to put it off.

- Occupy the Kids -

When you have kids its often difficult to carry on a serious conversation while they are tugging at your legs or trying to get you to do this or that for them.  So, be proactive and find something to entertain your children for awhile so that you can make your phone calls uninterrupted.  I found that the best way for me to accomplish this was to put Joe and Christine down for naps and let Nate have some tablet time.  Ah... silence.  ;-)

- Rely on God -
While we should always do our best at whatever we do, we should find a balance and also realize that He is taking care of every detail.  Whatever our prayer is God has an answer.  Sometimes it may be "no", but if that is the case then its because He has something else (usually better) in mind for us.  Take a deep breath and know that our lives are in the hands of the One True God.  It is so freeing when we rest in that knowledge.


Here are a few other helpful posts on this topic:

Real Simple  -  How to Stop Procrastinating

Life Organizers  -  7 Easy Ways to Stop Procrastinating

Get Motivated Stay Motivated  -  How to Overcome Procrastination

Prolific Living  -  18 Radical Ways to Stop Procrastination


I know there is no perfect formula and every situation is different.  But I hope that these suggestions will help you tackle whatever it is that you're putting off.  Because the fear of something is almost always worse than the thing itself.


Anxiety in a man's heart weighs him down, but a good word makes him glad.-  Proverbs 12:25

Fall Update - Christine

Christine continues to progress with her therapies.  She is steadily getting closer to catching up with Joe developmentally.  Some of the goals that they are currently working on are similar. Physical Therapy includes gross motor, balance, core strength, mobility, etc. Occupational Therapy works on feeding skills, fine and oral motor skills, grasping object permanence, balance and kind of whatever she feels like doing that day (you'd have to meet the OT, she's something!). Speech Therapy works on her communication skills, encouraging her to make sounds and signs, oral motor skills. Developmental Therapy overlaps some of the other therapies.  The DT works a lot on fine motor skills, motor planning, etc.
 

The most exciting thing to happen lately is probably Christine getting the hang of crawling!  It seemed like she was on the verge for quite awhile.  She would get up on her hands and knees and rock back and forth, she would transition in and out of sitting, onto all fours... and then within the past three weeks or so she has really taken off!  We're still getting used to keeping things out of her range now that she is mobile.  Check out this video of Christine crawling! 

She needs a little work on her "form" but its exciting to see her get around, its gotten her much more interested in her surroundings now that she can get from point A to point B on her own.  She's so proud of herself and so are we!

Joe - Fall Update

Joe and Christine saw ENT and genetic neurology last week at Riley.  Both were 2+ hour visits with only seeing a doc a fraction of that time.  I find it hypocritical that they can be over an hour late to my appointment with them but if we had been 15min late they would have rescheduled us.  Anyhow... nothing new really come up at these appointments. The ENT visit was a pre-ABR appointment.  Since Joe and Christine were homebirths we did not get their newborn hearing screen.  Because they don't exactly respond appropriately its difficult to test their hearing.  It looks like they both are going to need to be sedated for this upcoming hearing test (the ABR).  That test will take place next week and will determine if either of them has any hearing impairments.  Though their speech delays are probably not related to hearing loss it is simply something that they have to rule out.

 The genetic neurologist gently told me to stop looking for a name for whatever is the cause of Joe and Christine's delays.  He says even if we find a name to put on it, it won't change the treatment or outcome.  While I understand what he is saying, it is not what I wanted to hear.  I was a mess the whole rest of the day... maybe even a little still.  I don't know how I am supposed to be ok with all this.  What am I supposed to do as a mom?  Should I run myself and my family ragged searching for a name or a fix that may or may not be out there?  Am I a bad mother if I do stop looking for answers?  Its all exhausting.  I don't know what to do or think sometimes.

 Otherwise... we are seeing some progress with Joe's therapies lately.  I had a great parent teacher meeting with his Life Skills Kindergarten teacher.  He is walking at school in a Kidwalk without help and also in a posterior walker with some assistance (see video below).  He is using some communication devices to make choices at school and at home.  In the video above Joe is using a communication device to play Twister with the boys.  Its very exciting!

 

I often have days when this life is overwhelming but somehow I manage to remind myself that God knows what He is doing.  And someday He'll answer all my many questions.  But today is not that day.  So I try to keep moving forward the best I can and take things one day at a time.

 Psalm 32:8 “I will instruct you and teach you in the way you should go; I will counsel you and watch over you.” (NIV)

Medical Marathon

The last two weeks were chock full of doc's appointments for us.  It began Wednesday the 16th with a swallow study for Christine. For the test Christine drank and ate food w/ die in it while getting xrays to see where it was going (this is being done because she sometimes gets a rattle in her throat after drinking).  The initial findings were somewhat as expected.  They saw some small micro aspirations and recommended thickening her liquids (which we have already been doing).  I was comfortable with those findings and was having a pretty good day until the specialist called me later with some unexpected news.  She said she looked over the scans with her supervisor and they felt that Christine is actually having trouble even with the thickened liquids and they are recommending a g-tube.  She called Christine's pediatrician and who seemed to be less concerned than the specialist because Christine has not had any respiratory problems and is growing fine (not underweight).  Isaac reassured me not to worry about it until we talk with the pediatrician about it more (should do that by Friday at the latest).  But I was kind of freaking out a little bit.  I feel like this would be a big setback for Christine developmentally.

I saw Christine's primary physician on Friday (for Nate's well visit) and talked briefly about the swallow study and Tuesday Christine saw a developmental pediatrician at Riley North. Thankfully, we're all in agreement that because Christine has had no history of respiratory infections, breathing trouble, or weight gain issues we are not going to pursue a g-tube.  The developmental ped said there are obviously risks either way but that he saw no reason why we should not continue doing what we are doing, just "proceed with caution".  We'll keep an eye on her growth, thicken her liquids and make sure she continues to eat well .  Its probable that with continued therapy to work on her oral motor skills she will out grow this.  I am relieved to say the least.
We were previously using baby cereal but since the swallow study we have been using "Simply Thick" to thicken Christine's liquids.  We have noticed a decrease in the frequency of her little throat rattle.  And an increase in an effective cough reflex.  We are pleased with these changes but will continue to monitor her feeding situation.  Please continue to pray that this resolves itself and does not become a bigger problem down the road. 

Nate's well visit was uneventful (in a good way) compared to our other doctor's appointments.  He went through the motions of the eye exam (he has 20/25 vision), physical exam, he demonstrated his strength (what boy doesn't like to show off his guns?) and told the doctor all about what he is learning in school, his hobbies, etc.  As suspected, Nate is a pretty healthy, growing boy and there is nothing alarming or concerning going on with him.  Thank God!  I have enough going on with the other two to keep me busy!

Christine saw genetics at Riley on Friday the 25th. We waited 10-15minutes in the waiting room.  Then a nurse took us back and weighed and measured Christine and showed us to an exam room.  Another 10minutes go by.  The intern comes in and asks the usual medical history, family history questions.  She also does a physical exam of Christine.  Then she goes out to "staff" with the geneticist. Another 20-30 minutes go by.  The doctor comes in and asks some of the same questions that the intern already asked (did they even discuss Christine at all before he came in?).  Then he proceeds to ask questions like: "So having two special needs kids, do you feel like its your fault?", "Do you feel guilty?", "Do you blame yourself?", etc... I was fine up until that point and I lost it.  I was teary and sniffly the whole rest of the appointment.  The doctor said that he is assuming since two of our three kids have a similar condition that its probably an autosomal recessive trait and Isaac and I must both be carriers of whatever it is.  If that is in fact true then if we were to ever get pregnant again the baby would have a 1 in 4 chance of having the same thing that is causing Joe and Christine's delays.  The doctor did not recommend doing the same blood tests that Joe has had done because he assumes they would come back with similarly unhelpful results.  So, he and the genetics doc that Joe has seen in the past will be putting their heads together to assess what tests have already been done and seeing if there are any others that they recommend doing on the kids and/or Isaac and I to try to get some answers.

Last but not least, Joe saw a physiatrist on Tues the 29th. We have never been to this doctor before but she came highly recommended from one of our First Steps therapists.  When we first got there we went through the motions of all the usual stuff: weighing, measuring, medical history, etc.  Seeing as this was my fifth doctor's appointment in two weeks I kind of was on a roll.  I was answering questions that the nurse nurse who was doing our intake hadn't even gotten around to asking yet.  She stopped and asked me if I was in the medical field.  HA!  She said I sounded very knowledgeable and comfortable with medical terms that most parents are not familiar with.  I told her I had been around and had had a lot of appointments lately.  She said it is great that I am this involved.  I thought it was part of the deal, I never thought about being any other way.
Anyway, finally the doc came in.  If the comments from the nurse had at all gone to my head the doc brought me right back to reality.  She did a pretty thorough exam, she checked his range of motion, watched him hop around, watched him take a few steps with my help, got to hear him scream when he decided that he was done and wanted to go.  She wants xrays of his hips because one side seems a little longer than the other.  She said she might want another MRI, but not until she has seen the films from the last one (which was almost four years ago).  She wants Joe to have a hearing test.  And when we come back to see her later in the summer she wants to see Joe with all of his equipment, ie walkers, orthotics, etc.

Obviously we have a lot going on.  Joe has two more appointments coming up in June in addition to the "homework" just given to us from these doc's appointments.  And since Joe does not qualify for summer therapy services through the school he is going to be starting OT and Speech at a local pediatric rehabilitation center.  We also just found out that one of Christine's First Steps therapists is changing jobs and we will be having to find a replacement for her.  Our schedule just keeps getting busier and busier.

Please continue to pray for my children's development.  We still sometimes pray for them to grow strong and catch up.  But usually when we pray at bedtime Isaac will pray for "Joe to learn to walk and talk soon" and for "Christine to crawl and learn to talk".  Our God is a big God and He works all things for His glory.

All things work together for the good of those that love the Lord and are called according to his purpose. Romans 8:28

Whats Goin' On with Joe

Joe had had a busy month or so. He had his annual visit with the opthalmologist at Riley (because Joe has the RBI gene we have to have regular checkups to make sure he is not developing tumors in his eyes). Once again we are thankful that the opthalmologist gave us another good report regarding Joe's eyes.
We had his IEP at school and that went about as expected. He still qualifies for the same services, developmental preschool M-F and PT, OT and Speech therapy 45min each per week.
Yesterday we visited a physical therapist on a consultant basis. She doesn't take our insurance but she came highly recommended by a family member and our old First Steps PT, so when my aunt was able to make arrangements for us to get a consultation with her we were thankful for the opportunity. I think unconsciously I had high expectations for this visit. A part of me was hoping that she would have some miraculous insight that would give us the"real" answers that have seemed to elude us thus far. But she did not. She did however give some suggestions for supplements and treatments that could help Joe's development. So we will probably be pursuing new orthotics, new supplements and potentially getting craniosacral therapy.
We are currently awaiting the completion of Joe's new wheelchair. The one he is using right now is a hand-me-down and doesn't fit him at all. We went from a second hand chair that was much too small to one that is much too big. We are looking forward to having one that was made for him.

Doctor Doctor

I have had a really difficult time finding doctor for Christine. I was told that First Steps wouldn't come out for her evaluation until I get a doc's referral code. I've been on the phone with about a dozen doc's offices today and none of them are taking HHW patients right now. The office that she is assigned to now I would rather not go to because its on the east side of Indy and I've not had the best experiences with the staff already. I've gotten different answers from different people. I finally got ahold of someone who could set an appointment for us and was harassed by her because we haven't been taking Christine in for "well baby" visits. She went on and on about how she needs to be seen by a doc to be weighed, measured and if she'd been seen they'd have caught the delays earlier and I wouldn't be in this mess now... blah blah blah.
Eventually I ended up calling our HHW provider directly and asked them to let me know what docs in our county ARE accepting new patients at this time. There is one. One doc in our county taking new HHW patients right now. So I had them assign Christine to that doc (who happens to be near us thankfully). They said that it'd take up to 30 days for the transition in the system to be complete but that the doc can call them to verify her status and they should be able to see her before the 30 days are up.
Well when I called the doc's office they said they cannot see Christine because in the system she is still showing assigned to another doc. So I call that doc and they don't have any appointments available until MAY! Their waitlist is 10+ people long and some of those people have been on said waitlist since November. Not helpful.
One highlight in all this is First Steps was able to come out and do the evaluation with an Occupational Therapist and a Speech Therapist sans doctor's note. They did their thing: asked us questions about what Christine does and does not do, they played with her and tested her responses, etc. The OT confirmed that Christine will qualify for physical therapy and occupational therapy. So the FS coordinator will be calling me soon to set a date for the IFSP where we basically set goals and sign a bunch of paperwork. But therapy cannot start until after we get a doc's medical code submitted.
Rather than delay things any more we decided to go ahead and pay out of pocket to take Christine to our old family doc (who does not take HHW at all) just to get things moving.
So I had the IFSP (Individual Family Service Plan) meeting with our First Steps Coordinator today. We read over the evaluation and she explained the services that Christine qualifies for and we went through all the necessary paperwork. Apparently there have been a lot of policy and procedural changes happening at First Steps and while we are going to be able to have the same PT that Joe had we will not be able to have the same OT. It will be another two weeks or so before PT will start, and OT is unsure because First Steps is waiting to get the OT's credentials or something. sigh... so much for things getting going quickly. But regardless at least things are in motion.

This has been a terribly stressful time for me. Disappointing phone call after phone call, getting different answers from different people, not understanding the system... I have been mentally, physically and emotionally drained. But I feel like I am on the upswing of what I admit has been a very low time for me. I am not feeling quite as overwhelmed and disgruntled as I was a couple of weeks ago (when half of this post was written). I am trying to turn my focus upward to Him and not allow the devil to poison my thoughts as he has in the past. I have to remind myself as always that God is in control.

Another Delay

A couple of Sundays ago at church we had a sharing time. A middle aged woman shared about how years ago she'd had trouble with her basement flooding and she prayed daily that God not let her basement get flooded again. She prayed faithfully for that. And one day she came home from work to find the whole basement under water. She said she lost it. She couldn't even deal with it. She just went to bed and waited until the next day before she went through the motions of getting things taken care of. In the end insurance paid for everything and she got her basement fixed, new carpet, etc. What was a terribly frustrating and exhausting experience ended up being a blessing in disguise.
I share her story because it really hit home with me - brought me to tears. I feel like seeing Christine's delays is like watching my basement flood. We've been through all this with Joe and I know how hard it is. I just want to crawl in bed and not deal with it. And right now I just cannot see what good could come of this. Why is this happening? How does any of it glorify Him?
And I just found out that because of insurance issues I cannot even get Christine in to see a doctor (which needs to happen before First Steps will come and evaluate her for services) until next month probably. The doctors that I am interested in seeing are not under the plan that Christine was under and the process to get her switched to another plan takes a ridiculous 2-4weeks. I am so tired and frustrated. But in spite of all that is going on that is causing me to worry and stress out Christine is a bright ray of sunshine in my day. Her smiles and giggles never cease to make me smile. She is good natured and is a great sleeper. I could not ask for a better baby. Even now she is laying on the floor next to me batting at her toys and jabbering away. I can only hope and pray that her delays will be just a minor thing and that she will catch up in time and that it will not be a lifelong struggle for her and for me.

Optomistic Ophthalmologist

Last Monday Joe had his first appointment with the ophthalmologist at Riley. He has had his vision tested before by an optometrist but this is the first time he's seen someone specifically looking for retino blastoma (eye tumors) which his chromosomal abnormality puts him at risk for. It was actually a reassuring visit. The doctor said that kids who have retino blastoma are born with it and by Joe's age it should be visable. His eyes look fine and she says that she is confident that he probably will not develop any tumors. We will continue to get regular eye checkups to make sure if anything would develop that we would catch it early. But as he gets older the risk for tumors goes down significantly.
Also Joe has been increasingly active lately. His mobility has grown so much in just the last few weeks. He still is not quite crawling, but he is rolling alot, rotating himself around and transitioning from belly to sitting and back again often. He has even been doing some scooting around on his bottom. His reach and interest in things around him has increased as well.
It was only a short time ago that I could set him on the floor to play and half an hour later he'd still be in the same spot. Now he roams all around the room in a short time, getting into this and that. We've had to pay far more attention to what is on the floor now that he is getting around so well. His therapists are very excited about the things they have been seeing as they work with him lately. We are all very thankful to see this kind of progress from our special little man.

Diagnosis - disappointment

After almost a year and a half of doctor's appointments and blood tests they finally found something. Joe has been diagnosed with "a mosaic deletion of the 13th chromosome". It is a rare mutation on his DNA where part of the 13th chromosome is missing on some of his cells. This particular chromosomal abnormality puts him at risk for retinoblastoma (tumors in the eye). He will need his eyes checked regularly for the first 10-15years of his life. The risk for these tumors lessens as he gets older. We found this out over the phone a few weeks ago and were under the impression that this diagnosis was "it" - the answer that we had been looking for all this time. In the event of a tumor studies show that survival rates are very high when caught early. If you want more info on Joe's diagnosis please check out this link.
However when we went to our appointment at Riley with the genetic counselor she explained that this diagnosis does not actually explain Joe's dramatic delays. Because there is no family history of anything like this we believe Joe's to be a random occurrence and not something that one of us has passed on to him, therefore we have chosen not to get tested ourselves at this point. One more blood test is being done checking for Angelman's Syndrome. But after much discussion we think we are nearing the end of our search. If we wanted to continue it would be muscle biopsies and other more invasive procedures that we would be considering. All for what? At this point no matter what name is given to Joe's problems the course of treatment will most likely stay the same: more therapy. We do not feel that there would be much benefit to Joe if we continued pursuing a diagnosis.
This has been a roller coaster of a ride. There is so much uncertainty surrounding Joe's future. He has brought us so many joys and challenges already. We have no idea what to expect him to grow up to do or achieve. We don't know if he'll ever "catch up", or if I'll be changing his diapers for the rest of his life. There is such a broad spectrum of possibilities.
Joe is continuing to work hard during his therapy and making progress. He is showing more of an opinion about things which is a good thing (though I have to remind myself that when he's throwing a tantrum). Its becoming increasingly difficult communicating with Joe as he is still mostly non-verbal (though he does use a couple signs). Through all this we still remain hopeful that he will continue to progress. And whatever happens we know God will provide for Joe and for us. As always we covet your prayers concerning our special little guy.

What's New...

So last Friday I took Joe to IU School of Optometry to get his vision checked (again). We saw an intern and a supervising doctor. They did similar things as last year (showing Joe pictures to see if he looks in the correct direction, looking in his eyes with their little lights, dilating his eyes and checking his true prescription, etc) all with the same result. Joe's eyes are working just fine, slightly farsighted but that is totally normal for his age. They can find no reason for his lack of eye contact. So, while its good to know his vision is good, but its not real helpful at this point.
Joe had blood drawn in January for some genetic tests. We were told they were extensive tests that would take awhile. So after awhile I called and tried to get the results. No one got back with me. So I called again awhile later. They said the doctor was on vacation and that he'd look over the results when he got back. No one got back with me. I tried again last week and the girl I talked to said there was no record of me ever calling before. She said she'd email the results to the genetic neurologist we had seen for him to interpret and then she'd get back with me.
Well, she did get back with me on Monday. Only not with test results. She said that there was no record of the tests ever being done. She said we'd have to come in and get his blood drawn again and have it sent away to do the tests. No apology. No nothing. Just matter of fact. I was very unhappy to hear that. Isaac called Clarian West where we had the blood drawn and checked their records (which is connected to Riley and they have access to). They did a few tests in house but did not even draw the blood that was supposed to be sent to a special lab for testing. Then he called Riley again. They said that on Friday the doctor would discuss the results of the tests that were done, and we'd have blood drawn then for the other tests.
So... we just got back from our appointment with the genetic neurologist. Basically there is no news. Just more tests that are normal and got blood drawn for the tests that were supposed to have been done already. I felt a little better about the blood test mix-up after the doctor was apologetic, even a little embarrassed by the whole thing and double checked the new test orders to make sure the were getting done correctly this time. We are testing for Angelman Syndrome. Seizures seem to be a big sign/symptom of Angelman's and Joe has never had any. The doctor does not think Joe has traditional Angelman's but might have an atypical kind. There is no cure for this. But we will just have to wait and see. Beyond these tests he said further (and probably invasive) testing would probably be more for our benefit than for Joe's because if it is something like a mitochondrial disease or something there may be no cure or even treatment.
I've been uncharacteristically calm following this visit to Riley. I'm usually a mess after these kinds of doctor's appointments. I guess I got it all out of my system before the appointment this time. ;-) That and I had a couple of good friends praying for us. Thank you all for your continued prayers concerning Joe.

Coming Up...

Joe has been making small improvements in therapy. He is getting better at finger feeding himself (very exciting for mommy!). He is babbling more and he is making choices between 2-3 pictures. He is continuing to gain interest in people and things and interacting more. Joe is experiencing separation anxiety sometimes, which for him is a good sign that he is aware of us and when we come and go.

I have had a difficult time getting anyone from Riley to get back with me to let us know what the results of the last bunch of Joe's blood tests (taken months ago), but hope to hear something soon (since I made another nagging phone call today). We have a vision test at IU this Friday and another appointment with the genetic neurologist at Riley next week.

I've been in a funk lately and have found myself despairing over Joe's as yet un-named condition, or whatever you want to call it. I thought it would get easier as time went on, but I still find it difficult to talk about it. I feel like I am in limbo sometimes. Its hard for me to be around "normal" people and its just as hard for me to be around the "handicapped". I keep finding myself comparing Joe to other kids. I know I shouldn't but I cannot seem to help it. I am constantly wondering and worrying. His future, our future is so uncertain and that is still so overwhelming to me sometimes. I honestly do not really have high hopes for getting answers anymore, certainly not any kind of a "cure". I feel like I am just going through the motions, I do not expect to find out anything new. I think we'll get told to keep doing therapy and wait and we will just have to wait and see what he what it is that God has in store for our future.
As always your prayers are appreciated.

Eyes4Wellness

Last week Isaac, Joe and I attended an open house at a doctor's office. We were not sure what to expect but we had had good first hand referrals from two reliable sources(my aunt and our PT). EyesForWellness offers vision therapy for people of all ages and abilities. We got to meet the doctor and be shown around the office. We both strongly feel that Joe would benefit greatly from vision therapy.
Unfortunately this doctor does not work with Children's Special Health Care Services. We are hoping to find a way that we can maybe pay out of pocket to see her and be reimbursed by CSHCS. But we are not sure if they will do that or not. She did recommend another doctor who does similar therapy who is actually closer to us and does work with CSHCS.
So... either way, hopefully we will be able to get Joe in vision therapy soon. Keep it in your prayers! ;-)

Milestone!

The past week or so Joe has made significant improvement in the area of self feeding. He has gone from feeding himself the occasional cracker to taking bites on his own at every meal. Not only that he is showing frustration if he does not have something that he can feed himself. He has become actively interested in self feeding, whereas before he was just content with whatever we fed him. This is very exciting for us! And also a little frustrating as he is being very vocal about his opinion about things now. We have to remind ourselves that this is all part of the process.
We're in the process of appealing our insurance company's decision to drop Joe from our insurance policy (per his "preexisting condition"). Since he doesn't have a diagnosis we do not think that they should be able to do that. But we are not sure what exactly the laws are for this kind of situation but we're working on it.
Isaac attended a hearing with the Dept. of Health and Children's Special Health Care Services a couple of weeks ago to see if they could move our effective date back a couple weeks to include our first appointment at Riley and all the expensive blood tests that were done that day. He felt that that meeting went very well but we may not hear their final decision for another few weeks. ** This just in... we got a certified letter from the Indiana State Department of Health stating that the did in fact push Josiah's eligibility date back two weeks which will cover the initial Riley visit and tests! Whew! What an answer to prayer! Thanks to all those who have been and continue to pray for us. God is good!

St. Patty's Day Prayer

Today we are enjoying beautiful springlike weather here in the Hoosier state, which is rare for St. Patrick's Day. The sun is shining, its warm but we have a nice breeze blowing by to remind us that its not quite fully spring just yet.
The prayer request that I have is actually about our Little Joe, not St. Patty. Around the end of last week we got a notice from our insurance company (that we've been with since last fall). It stated that they found Joe's delays to be a preexisting condition and he was therefore uninsurable and they were removing him from our policy. We are unsure of how his problems can be labeled a preexisting condition when he has no diagnosis. We are in the process of talking to different people and seeing if there is anything we can do to get them to reverse their decision.
Also, there will be a hearing at the end of the month with Children's Special Health Care Services to appeal that our effective date be moved a mere two weeks back to include our first appointment at Riley where they did a series of blood and urine tests that cost a pretty penny. We have been anxious to hear what their decision will be.
On a lighter note: Joe has been working hard in his First Steps therapy. He's been vocalizing alot lately and has even been whistling sometimes. While I can't say that he has really learned many new skills lately, he has been getting more and more comfortable doing things that were difficult for him a short while ago. Things like sitting, reaching for toys, etc. We are trying to transition Joe to a different sippie cup. The one he has been using for quite some time was great but had a soft tip and he has gnawed holes in almost all of them! So, we are working on getting him crossed over to a hard tipped cup. He is interacting with us more and more. We have gotten to attend a couple children's programs at one of our local libraries and we all enjoyed being able to do that together. Here is a video of Nate and Joe playing ball just yesterday. Please ignore my scolding voice in the background. ;-)

So we would greatly appreciate it if you could please say a prayer for these matters mentioned above. Insurance is not a good thing to be without and Joe's mounting medical bills are not something we are completely prepared to pay for on our own right now. Thank you and we will keep you updated as we learn more about the situation.

Vote!

My cousin (who is handicapped) has benefited from a Medicaid waiver and was on the waiting list for YEARS before getting approved. This would be very helpful for us if we continue to need medical services for Joe's developmental problems. It would be great if we (and other families like us) didn't have to wait several more years before getting this assistance.