Keep on Movin'

Another typical week has come and gone.  I am putting in extra hours at work, so I am behind on everything at home!

Tuesday was Endocrine doctor day.  Aly has grown almost an inch from the last visit, about 6 months ago.  She is still behind her peers in growth and the doctor would like to see some "catch up" growth, so we are supposed to increase her growth hormone dose.  If anyone remembers, when we did this originally, it threw off Aly's medication (desmopressin) that controls her urine output.  It also made her fidgety.  We increased it just slightly this week and are supposed to slowly increase in the upcoming weeks.  It seems to already be affecting her medication dose.  She was on a great schedule only needing to take her medication in the morning and evening.  Now, it doesn't seem to last as long and she's taking it right around dinner time.  We are having to adjust the dose, taking a third dose to get her closer to bed time so she doesn't wake during the night or very early a.m.  So, what is going to happen when we increase the growth hormone more?  Is it worse to not sleep and be tired or not grow and be short?  UGH!  I guess we'll figure that out as it gets more out of control.
Aly was also started on a very low dose of estrogen.  They try to mimic what a preteen girl would go through if she had a normal functioning pituitary gland.  They will slowly increase the doses as she gets older and get to the point where she is taking some form of birth control so she will get the hormones needed and have regular menstrual cycles.  Oh, joy!  When I went to pick up the prescription, I was told the pharmacist wanted to chat with me about the prescription.  She questioned me as to why a young girl would need to take estrogen, saying that it was very unusual.  I had to explain the situation to her and she's then like, "oh, that makes more sense then."
Thursday was physical therapy day and yoga day.  In my last post, I was happy to have found Sister Kenny and how they had an office right in Albertville.  Well, of course, as soon as I posted that, I got a call from them and some things had changed.  First, they had to cancel the prior week's appointment because our insurance company was slow to respond for coverage.  Then, the therapist we had met with the week before said she was going to turn Aly's case over to another therapist who she thought could better assist Aly.  So, now we are required to drive to Buffalo every Thursday as this person does not come over to the Albertville office.  It is, at least, still closer than going down to the cities I guess.  So, we shuffled off to Buffalo for Aly's appointment on Thursday afternoon.  It will be at 3:30 every Thursday, which I am also glad for as Aly will only miss about 10 minutes of the school day.  Because we were seeing someone new, Aly had to do some additional testing before starting the actual therapy.  I am hoping this week, she will FINALLY start the actual physical therapy.  I am still happy with the clinic and am happy we found someone to help!
Thursday night we traveled down to Children's for the first yoga session.  That is going to be quite a haul every Thursday night, for 8 weeks, but I think it will be worth it.  She didn't really get to know any of the kids yet.  I think they need a little ice breaker.  There are 2 girls that seemed to be about Aly's age.  One was not feeling good and didn't really participate.  She kind of sat and watched.  The other seemed quiet and shy.  There are also 2 teenage boys, both older than Aly.  So, a total of 5 kids.  I'm not sure if that is the whole group or not.  All the kids brought one parent along who can also join in on the yoga.  It was a nice evening.  The yoga instructor said she was going to start slow and increase the activity as we go along.  This night she mainly focused on relaxation and breathing.  It was so relaxing, one of the boys fell asleep!  Aly said she really liked the yoga.  They also gave us a DVD to do at home twice a week.  We went out to do some errands, this weekend, and Aly and I found a couple of inexpensive yoga mats at Marshall's, so she's excited to keep doing it.  I think it will be a good stress reliever for her.  Since the yoga is part of a clinical study, they have questionnaires for the kids to fill out, mainly with questions relating to sleep habits and stress.  We went down, a couple of weeks ago, to fill out the initial questionnaire and then they did it again on Thursday night.  We will also have to fill it out again, midway through the classes and at the end.  This questionnaire asks the kids to reflect on the past week and it goes through a list of choices, such as "are you nervous or not nervous" and "are you upset or not upset", both times we have done them, Aly has answered that she is upset and nervous.  So I discussed these findings, with her, on the way home.  She said, "well, it said to think about the past week and then answer.  I have been nervous and upset at some point in the last week.  Like, I was upset that I didn't do as well on a test that I thought I did good on."  Well, I guess I'm glad that's what the answers were about.  I guess as an adult, I would answer that question differently.  Just because you had one or two upset moments throughout the week, would you answer that question as being upset or not upset when reflecting on the week?   It just seemed odd, because there were also things like calm or not calm and happy or not happy and those were answered as calm and happy.  Sometimes I think I should've gone to school for psychology because I'd really like to know more about how minds work.
Anyways, I am feeling more calm because some more things have been crossed of the list of things to do for Aly.  Not quite as much time spent on the phone lately.  That is a bonus!
Aly is looking forward to "Snow Week" at school.  They have different days to dress up.  One day is dressing up as something that ends in er.  She decided on painter (after discussing many things that end in er), so we went to Goodwill and struck it lucky on finding a pair of painter paint type jeans that fit her.  We are going to have some fun throwing some paint on them, as well as a t-shirt, and she's going to stick some paint brushes in the pockets.  Should be cute!
Aly also had some fun in the snow outside today.  It is mild, about 30 and the snow is melting and making for perfect snow fort weather again.  She and Kevin did some more work on the fort started last week...this looks fun, but I am wanting spring so very badly!

Happy Valentine's Day!

Just wanted to check in and say, "HI!"
Things, as in phone calls and appointments, seem to finally be slowing down.  We have found, what seems to be, a good physical therapist at Sister Kinney and they have an office, right close, in Albertville!  SCORE!  Other things going on:

• Aly had her last swim team practice of the season.  It will start again in April.  
• Aly starts yoga class, on Thursdays, as part of a clinical study of cancer kids, to see if yoga helps kids recovering from cancer regain their strength and flexibility.  Of course, it means a drive to Minneapolis every Thursday night, but I'm hoping she will meet and get to know some other kids recovering from cancer.
• Aly is taking guitar lessons on Tuesday evenings.  I'm hoping this may help with her dexterity, and she's been wanting to get back to learning guitar.  She had just started lessons when the cancer diagnosis came at us.  
• The Botox is not helping the jaw locks.  She is still having them a few times a day and also while exercising still.  They want to continue to increase the Botox dosage, but Aly doesn't want to.  I don't blame her, it is not helping and each time means going to the hospital, sniffing nitrous (laughing gas) and being poked in the face with a needle.  She doesn't remember the pain due to the gas, but it is still not a fun experience.  They still can't come up with what exactly is causing them.  I wish they'd just go away, the same way the started!
• Aly meets with the Endocrine (hormone) doc on Tuesday.  Just a check in to see how she's doing  on height and weight to determine if the growth hormones are doing what they are supposed to.  
• This weekend's snow brought the kids out to play.  It was nice to see Aly out enjoying the snow with the girls.  It's been a while!  Everyone is so busy during the winter or hibernating from the cold.  It was a rather warm snow fall, perfect for snowmen and snow forts! 
• Aly is looking forward to having a birthday sleepover at a friend's tomorrow. She is supposed to dress up like she's going to prom and also bring another outfit of her choice (she chose rock star).  Sounds like fun to me!  She also had a play date last weekend, so things are looking up!

That's about it from here!  Hope you all are doing good!  

Just Another Day in the Life...

Ah, yes a 2 hour late start.  Gotta love the 5:30am wake up call to let us know the kids don't need to be at school until 10!  Who can go back to sleep after that?

Our saga of finding physical therapy for Aly continues.  I don't get why this is so hard!  After not finding anyone, nearby, I called Health Partners to see if they could help.  They directed us to Phenomenal Rehabilitation which is right here in St. Michael.  I called and asked if they work with kids and told them what we were looking for, occupational therapy for hand and arm weakness.  They said, "oh yes, we can do that."  I was thinking, "thank God, I've finally found someone and they have available appointments right away!"  Well, no, not so fast.  I took Aly to the appointment, yesterday.  We get there, spend about 10 minutes filling out questionnaires and medical history paperwork.  The therapist comes out and introduces herself and brings us back into a room.  She proceeds to ask why we are there and what kind of treatment Aly is looking for.  I explained that she has dexterity issues, both speed and strength.  She then tells us, "well, I am going to be honest with you.  My expertise is in shoulder problems.  I could help treat Aly, but I think you'd be better off going to an Occupational Therapist."  UGGGHHHH!  I told her that is what I requested when I made the appointment and they had told us, "yes, we do that."  To which she replies, "well, they (meaning the receptionist) sometimes don't know the difference."  Again, UGGGHHHH!  So, another wasted afternoon of getting Aly out of school early, only to accomplish nothing!  This clinic directed us to Sister Kenny, so we will try again on Wednesday!
Aly and I were both frustrated.  When we got home,  Aly proceeds to say to me, "I wish I could have a week where I didn't have to be me....no appointments, no shots."  What do you say to that?  I happened to be at the computer, searching for more info on low vision services and ok, also checking Facebook.  I came across a video that a relative had posted.  It was about a couple who have adopted several special needs kids from across the globe.  I said to Aly, "I know it's hard Aly, but you have to remain positive, because things could be worse.  You are healthy and can function normally."  I told her I had just watched this video about adoption and then we watched it together.  It was very heartwarming and wonderfully done.  This couple had adopted a couple of boys with no arms.  It showed how one boy learned to play the piano with his toes.  This boy was adopted from Romania.  He told his story, that in Romania, when you are born with a deformity, it is considered a curse from God, so he was cast aside and not given the care needed.  He said he weighed 9 lbs when he was 1 year old!   The other boy was shown getting into a special equipped van that he could drive with his feet.  It was amazing.  It spoke about how children can grow and flourish with a little unconditional love.  It also spoke about how special adoption is, that when you are adopted, you are chosen from many in the world.  I am paraphrasing, and not saying it as special as it sounded, but I loved the message and I think Aly got it too.
I hope that we will reach a point where there are less appointments, less frustration.  It is not easy, especially when we've been wasting so much time!  I left messages, for a few people, last Wednesday and just got return calls yesterday.  I also asked Health Partners about low vision services.  They had no clue of where I could find services and the woman also said that they wouldn't cover those costs anyways.  They don't cover the cost of a white cane.  That is another thing I don't get.  How do health insurance companies not cover glasses, eye exams, or really anything to do with eye care?  We've always had to pay out of pocket for glasses and such.  Aren't they a necessity to function?
We are still waiting to see how the Botox is performing.  It seems to have helped, at this point.  Aly had a couple of jaw locks (which is an improvement) over the weekend, but NONE yesterday.  I hope it continues!  Last time she had it done, the Dr. said it takes about a week to see the full effect, so we'll patiently wait, but so far so good.  

Awesome, Awesome, Awesome

Funny...I just finished typing the title of this post, and my mother called.  She said she texted Aly and asked her how the basketball event was, and Aly texted a one word answer back, "Awesome."  

It was an awesome event put on by the girls' basketball team, coaches and booster club on Tuesday night.  We cannot thank you, all, enough for letting us participate in your cancer awareness event.  It is wonderful that you choose to do an event, such as this, and keep it local.  We are truly blessed to be part of such a great community.  The saying, on the back of the t-shirts said, "finding a cure, starts with awareness."  This is so very true, and that is the best message to share.  Thank you, to everyone, who attended and showed their support for Aly and Tyler.  It was amazing.

To start things off, Aly and Tyler got to join both teams for a picture.  Then they were included in the starting line up and got to give all the players high fives.  Aly and Tyler were also brought to center court and a little of their stories were told.  They were greeted, by the crowd, with a standing ovation for their personal fights against cancer.  It was so cool and so moving to see the support.  

During halftime, Aly and Tyler participated in drawing names for the winners of the raffle items.  The first name to be called was Aly's social studies teacher, Mrs. Autio.  Mrs. Autio was one of a few people who was wearing a Rally for Aly t-shirt.  That was perfect!  Congrats Mrs. Autio and thanks for  wearing the Rally shirt!  Thank you to Mrs. Kelly, as well, for the special t-shirt combo she had on!  She had Tyler's T-Sizzle shirt and Aly's Rally shirt sewn together, so she had T-Sizzle in the front and Rally in the back.  Way to rock it Mrs. Kelly!  :)  

At the end of the game, both teams, coaches and Aly and Tyler joined hands, at center court, for a prayer.  They included the kids' fight in the prayer.  It was very touching.  

Thank you, so very much, for touching our lives in this very special way.  We had a great time.  Aly was  so excited and was just glowing after the festivities.  I know it gave her spirits a boost as it did mine, as well.  It's been a tough journey, and even though the cancer is gone, there is still a constant battle remaining.

STMA ROCKS!    

Today, Aly got up bright and early to go to the Children's Hospital for the Botox injections for her jaw.  Kevin took a turn in bringing Aly down to Minneapolis.  They had to arrive at 6:15am, for a 7am appointment.  The doctor likes to put the kids under with nitrous (laughing gas) so they don't feel the pain of the shot.  Last time, I took her, and he said, "these kids have been through enough."  Maybe I should've requested the laughing gas at the clinic last week when Aly had to have 4 shots!  

Anyways, please say a prayer that the Botox will stop the jaw locks.  This time they did a stronger dose.  She's still been having jaw locks a few times a day.  She is used to them now, but it would be nice to have one less thing to deal with!  Thanks!  

White Cane

 Last week, Aly was playing with her American Girl dolls and came up with the idea of wanting a white cane for her doll Hope, who is the one we specially ordered with no hair.  Aly went on the American Girl website and searched for a white cane.  They have other accessories, such as wheel chairs and crutches, but no white cane.  So, Aly proceeded to Google and searched for "white cane for dolls."  She came across a website that shows how you can make one, so that was the craft project for the weekend.  On Friday, Aly and I went to Home Depot and purchased a wooden dowel and some black, red, and white electrical tape as well as some white spray paint.  I also purchased some paint for my bathroom as that was my project for the weekend!  Kevin and Aly worked on the cane.  Kevin cut the dowel down to size and then spray painted it white.  Today, they used the electrical tape and some string to make the finished product.  It looks pretty cool and just like Aly's cane.  Aly was so excited!
I was excited to paint the bathroom!  It looks fresh and new again.  Aly even helped me clean it after I was finished painting last night!  She offered.  She asked if we could play a game and I had said, "maybe after I finish cleaning the bathroom, " to which she replied, "Oh, can I help?"  I'm not going to deny anyone who WANTS to clean the bathroom!  I hate doing it!  While I was cleaning the sink and scrubbing the floor, she was cleaning the toilet and rinsing out the bathtub.  Great teamwork!  Once we were done, we joined Kevin for some games.  Of course, we also had Hockey Day in Minnesota on the tv in the background.  The Gopher game and the Wild game were good!  We were a little worried about the Wild, but they kicked it in gear.
Aly also did more cleaning on her day off from school on Friday.  She's done this before, and it is always a very nice thing to come home to.  She had done the dishes, straightened up things that were laying around, emptied the garbage cans and put her own laundry in the washer.  NICE!  I don't know where she got that love of cleaning from, but I like it!  :)
I'm still going crazy trying to set up appointments.  I've called 2 physical therapy clinics, in Maple Grove.  One is an offsite clinic for Children's hospital, and they have a waiting list, if you can believe that.  The other is affiliated with Gillette's Children's hospital and they are booked solid as well!  I was hoping to find a clinic closer to home, but we may need to start traveling back to Children's.  I am amazed!
I also took Aly in, to her pediatric clinic, to get a couple of immunizations that she needs for school next year and I wanted to get her a flu shot as well.  Like everything else, I've been running behind on maintenance items.  We went, after school, on Tuesday.  We get to the clinic, get ushered into a room.  It was just a nurse's appointment, so we didn't have to wait long.  I give the nurse the immunization form I needed filled out and she goes over what Aly needs.  She needed a tetanus shot, a Varicella (chicken pox) booster and then the flu shot.  She leaves the room to prepare the shots, comes back in, administers the shots and then tells us we should go out to the waiting room and sit for 20 minutes to make sure there are no reactions.  We sat for about 5 minutes and the nurse comes back out and asks us to come back in.  We are ushered into an exam room and she proceeds to tell us that she gave Aly an MMR (mumps) vaccine instead of the Varicella (pox).  As usual, that shock thing just comes over me and I become dumbfounded and can't think of what to do or say.  She says, "I talked to one of the providers and there isn't any concern about getting an additional MMR shot."  She also says, "you won't be charged for the MMR shot that was given in error, and you won't be charged for your clinic visit either."  Well, that was the least of my worries.  What the heck?  How does something like this happen?  The sheet I gave her had the shots, needed, clearly highlighted.  She also confirmed it verbally and I agreed!  I don't know why I can't yell, or scream at people when I get angry.  I shut down and go into shock. What do you do in a situation like this?  It is so unreal?  I can't believe stuff like this keeps happening!  Aly had to have the additional, correct shot, so she endured 4 instead of 3!  Once it was done, I went to the front desk and asked for the clinic administrator.  I was livid.  I have had enough of this type of crap!  We waited for about 5 minutes for this person to come.  I said to Aly, "I'm sorry, but I need to talk to someone as this is just wrong."  Aly's reply, " that is completely understandable and makes sense."  She was angry too!  We went back into another room.  I was near tears as I explained what happened and how Aly has been through enough crap lately, and to have to endure an extra shot was unforgivable.  It was unforgivable that a mistake, such as this, was made.  What if it was something that Aly had a reaction to?  My mind raced to all the possibilities.  I wanted to be sure this nurse was disciplined and that this wouldn't happen again.  This lady was nice and said everything would be investigated.  She, again, repeated that I wouldn't be charged, to which I said," I don't care about that!" I wanted confirmation, from a doctor, that there would be no issues with the extra dose.  I was asked to wait to talk to a Dr.  I told them to call me.  The Dr. called and said there was no issue.  She said she has a deficiency in her immune system in regards to the measles, so she's had 7 MMR shots in her lifetime.  I also looked on the internet and found several articles about how an additional MMR shot just gives added protection so I was extremely relieved, but still angry.  I repeated my concerns with the Dr. and I explained what Aly had been through recently and I made a comment that, "the health care industry is a very scary place."  To my shock, she agreed.  That makes me feel really safe, NOT!  She did say, again, that the incident will be investigated.
I just will never get it, I guess.  Do I let this go?  I don't know how to pursue it any further.  There are so many things, in Aly's healthcare case that I'd like to question, but who do you question?  Is there such a thing as an advocate?  Without spending $$$$ on time, lawyers, etc.?  There are so many what ifs...somedays I just sit and think about what would've happened if things were done differently.  If we would've chosen different paths in her care.  In something so life threatening as cancer or any other life threatening issue, you should be assigned a third party advocate who knows, who's been through it, who can give you advice when you have someone's life in your hands!

Upcoming Event

WHO: STMA fans 

WHAT: Girls’ Basketball game vs. Monticello 

Childhood Cancer Awareness night 

WHEN: Tuesday, January 22^nd 

9^th grade and JV games @ 5:45 p.m. | Varsity game @ 7:15 p.m.

WHERE: STMA High School gymnasium

All money raised on the 22^nd will go to the families of Aly Juntunen and Tyler Purohit, 6^th graders at Middle School East.  

RAFFLE TICKETS for a Flat Screen TV, Timberwolves tickets, and Camp Snoopy passes (among other prizes) will be sold during the JV game and the first half of the varsity game. Drawings will take place at halftime of the varsity game.

$5 for 1 ticket  |  $10 for 3 tickets  |  $20 for 7 tickets   

There will also be a 50/50 drawing ($1 per ticket) and free will donations at the door. 

The proceeds collected for Aly, will be donated to the Pediatric Brain Tumor Foundation, in honor of Aly being a cancer survivor.  Please join us and help raise funds to help Tyler's family and support cancer awareness!

More information:

Please mark your calendars for the annual Coaches vs. Cancer girls’ basketball game coming up next week. We will host the Monticello Magic on Tuesday, January 22^nd.  The 9^th grade and JV teams will play at 5:45 p.m. with the varsity to follow at 7:15 p.m. As we have done the past two years, our fundraising efforts will again stay local. This year we are raising money for two 6^th grade students at Middle School East: Aly Juntunen and Tyler Purohit (see attached picture of both of them). 

Aly was diagnosed with a germ cell tumor in April of 2011.  She has undergone surgery to remove the tumor and has had plates inserted to help her head heal. She has MRIs to check for any reoccurring tumors every 3 months, and has been cancer free since November 17^th.  Aly has lost vision in her right eye and a majority of her left eye. These days she is feeling well, is active in swimming, and is doing well in school!   http://lovingalyona.blogspot.com/

Tyler was diagnosed with Glioblastoma Stage 4, an aggressive form of brain cancer in January of 2012. He has had surgery to implant a shunt to relieve the fluid pressure, biopsies, MRIs, and continues to have radiation and chemotherapy treatments. His latest MRI in December showed no growth or movement of the tumor! Tyler is doing well, but is cautious to not get sick these days. Tyler's favorite past time activities include playing video games, and watching the Vikings.http://www.caringbridge.org/visit/tylerpurohit

I Just Can't Make This Stuff Up!

I know you all may be getting tired of my negative posts, I hope you will bear with me because I really have to share my last two days.  As usual, it is some good, some bad and some just unbelievable.
First, I'll share yesterday.  Aly had an appointment for physical therapy.  Now, I've been through some physical therapy when I had some back issues last year.  I think many of you have probably been through some for aches or pains.  When you think of physical therapy, you think you are actually going to do something physical, right?  Isn't that the whole point?  Doing something physical in order to make your body stronger?  Well, that is what Aly and I expected.  That is not what we got.  We got to the appointment, joined the therapist in her office and here's how things went down:
1.  The first 10 minutes she took refreshing herself as to why we were there, reviewing her notes on the computer, asking us questions we'd already answered...to me, these are things you do before your client arrives.
2.  The next 5 minutes was spent digging through her file cabinet for exercises Aly could do to stretch out her fingers and making copies of those exercises, again shouldn't those be ready beforehand?
3.  Five minutes taken showing Aly how to do the finger stretches (that was it for physical activity).
4.  For another 10 minutes she talked about things Aly could do at home.  She listed off things like doing puzzles, coloring, crocheting (yeah, that is a great preteen thing to do).  It went on and on...playing with clay, bouncing a basketball, playing Jenga, playing the piano, shuffling cards, etc.  She then pulled out a catalog of things that she orders from.  Showing us other items as ideas.  So, basically, I'm to go out and blow a wad of money on craft items and games for Aly to use at home.  Really??
This lady supposedly has some training in low vision therapies as well.  We were directed to her because she was closer to our home than the one we were working with in Bloomington.  Even though she is not licensed, we were told she'd be able to help with some low vision techniques.  I was thinking it would be great to kill 2 birds with one stone!  Well, that isn't going to happen.  So, anyways, she says to Aly, "I see you brought your walking stick with you today."  Aly and I looked at each other like what is she talking about?  Then we realized she was calling Aly's white cane a walking stick.  Hmmm....At this point I felt like I was on that show Punked or it was some kind of practical joke.  Aly and I shared the experience with Kevin when we got home and he was like, "I would've said something."  I've dealt with so many issues like this I tend to go numb and into shock, just sitting there thinking, oh here we go again.  Now, it's going to be more work, finding someone else, starting over, more phone calls, more time wasted...UGH!
5. Knowing that Aly has her "walking stick", she wants to know how Aly uses it so we go for a walk around the building.  This takes another 10 minutes.  The only helpful thing that came out of this whole ordeal was that she noticed that Aly does not use her scanning techniques and scan all the way to her right.  She almost ran into something as we were walking around.  This is why I've been looking for someone to work/reconfirm that Aly needs continued reminders/training in her daily travels.
6.  We went back to the office and sat.  She asked us if we'd be able to do the home activities, as discussed, for the next two weeks.  I did tell her I wasn't going to spend money on activities and she says, "well, I can understand that."  What I should've said is, "I thought that is what our insurance company is paying you for."
Needless to say, I am not taking Aly back there.  Which brings me to today.  I attempted to call and cancel the remaining scheduled appointments.  That should be a one call, 5 minute deal right?  UMM...NO...How about 20 minutes, 3 calls, transferred to a total of 6 different people, none of whom could help me.  SERIOUSLY, I'm really not kidding, six different people.  The last, told me I need to talk with the therapist directly.  Why?  I didn't talk to her directly to set up the appointments!  I ended up leaving her a voicemail.  I did tell her I was not happy with the direction the therapy was going and I wanted to cancel all remaining appointments.  Sorry!
Ok, to get the good part in here, I have to revert back to yesterday.  On the way home from the appointment, Aly and I stopped at Target to pick up some prescriptions and find something for dinner.  We bumped into Dr. Leah Colby who is a wonderful optometrist.  If you are looking for one, she works at Eye West Clinic. :)  She is the one who directed us to the eye specialist that found Aly's tumor.  I have a special connection to her as we went to the same college and played on the same tennis team...anyways, we haven't seen her for a couple of years as Aly's been seeing the specialist.  But long story short, she saw us, Aly had her cane with, and she stopped to ask us how everything was going and get an update on Aly.  I said we have been having trouble finding a vision specialist close to home.  She happened to be working with another child who was losing vision, actually going blind, so she had some ideas.  Oh, thank you Lord.  You knew what I needed yesterday and put me in the right place at the right time.  I emailed Leah this morning and she gave me some leads.  Of course, now I have more phone calls, but I think we're on the right track, at least with the vision work.  She even offered assistance.  If I had that offer more often, life would be so much better.
So there you have it...the crazy, the outrageous and some good!

On another note, I was given a gentle reminder, by someone close to me, that as we start this new year, we do need to look at the positives too.  Through all the craziness that continues, we need to stop and say, "thank you", again, to all those who have kept our family in their hearts and prayers and have helped support us through prayer, through financial gifts, through kind words.  Thank you, to everyone,  for helping us through the past 2 years.  We are forever grateful and would not have made it through without you.  I hope you will continue to keep our family surrounded by prayers and positive wishes.  Thank you very much, may you all have peace and good health this new year!  Thank you!