Does it Make a Difference?

Does the medicine make a difference?  Ryan has had a great school year.  His teachers send home good reports and when we speak with them about the difficulties he is having at home after school and with his homework, they say that they do not see any of that behavior in school.  Well, until today.

I forgot to give Ryan his medicine this morning.  When I realized this, it was already close to 8:30 and the bus was about to come.  I could have quickly administered it to him but then I thought it might be too close in time to the dose he would be getting at school during lunchtime, so I opted to skip it.  I remember thinking to myself, "He is usually wonderful at school; he will be so busy with activities and school work all morning that he'll be fine without it."  Boy was I wrong!

Here is the note I received from his teacher today:

Ryan had a tough morning.  He was calling out, not following directions, and refused to flip his card.  We encouraged him to earn it back but unfortunately it continued in a negative way.  Ryan continued to call out, called another student a tattle tale, then threw his highlighter.  Ryan refused to apologize or flip his card.  The principal came and spoke to Ryan.  Ryan still refused to apologize.  I finally said he could not go to lunch unless he apologized- that worked.  Ryan did have a better afternoon and earned his card flipped back.

DC

Happy Fall!

Well we've all seemed to get back into the swing of things returning to school.  Ryan and Julia are doing very well and are getting glowing reports from their teachers.  Like with all kids, I'm sure, there are times when we have to work around Ryan's resistance to homework.  But there is a noticeable improvement from last year to this year despite the tremendous increase in the amount of work he receives (about triple the amount over last year!).  He has a math worksheet everyday and this is easy for him to do and he rarely gives us a difficult time about completing it.  It is usually the first thing he wants to get done, which as a math teacher, puts a smile on my face.  The reading and writing is where he gets stumped and causes the most resistance.  But with breaks here and there we can get through the homework.  It can spread out from 4 - 8 but we don't mind as long as it is getting done.  Things are going great with Ryan on the Focalin.  Our only concern would be the loss of appetite that he often displays.  He is so skinny as it is.  He takes the medication in the morning before he leaves for daycare and then again with the nurse at school at lunchtime.  During the last post I mentioned that we needed to change psychiatrists.  We have done that and now have someone in our plan.  And we have also worked it out where some of the monthly prescriptions can be written directly from his pediatrician, which is awesome because she is located about 2 minutes from home.

Jack has adjusted nicely to his routine at day care.  He often cries for a minute when I drop him off but it is brief and he enjoys his time there.  But I do love seeing his face when I pick him up in the afternoon.  It melts my heart at how happy and excited he is that momma is back to get him.  My trips dropping him off and picking him up will dwindle down as I will be home with the new baby and that job will now become Phil's until I'm ready for Jack to stay home with us.  Maybe at the end of December.

This is my last week at work, as I'm less than two weeks away from my due date.  Leave it to baby #4 for my feet, ankles, and legs to swell during pregnancy.   Definitely not fun and it has been a rough couple of weeks.   I finally packed my bag for the hospital and I think Phil and I have at last agreed on a name (we're not telling!)  We're all excited to meet our new addition to the family but I also know that I will miss my friends at work and my students.  In the grand scheme of things I know they will get by just fine without me and these next 8 months will be such a small portion of their entire educational career, but I will still miss them.

Ryan has been into drawing lately, more so than ever.  He draws these elaborate scenes in a notebook while he's in bed at night.  They range across a variety of topics but usually have something to do with either a book that he recently read, a show that he is obsessed with watching, or an event that took place that he was extremely excited about.  For example, our neighbor, a police officer, brought home an Army-type hummer one day and invited the kids over to sit in it and check it out.  Ryan went bananas over it and drew Army vehicles for several days in a row.

There are several birthdays this week in our family.  My Uncle Tony in Heaven would have been celebrating his birthday.  Last month his grandson, Anthony Robert was born at approximately 32 weeks.  He was just released from the hospital yesterday.  We are thankful that things are going well for him and we can't wait to meet him!  It is also the birthdays of both of my grandmothers and mother.  All three of these women sacrificed a lot raising their children.  My mom raised my brother and I while running our family business.  Her and my dad worked crazy hours each week to build the business and keep it running successfully for almost 30 years before they sold it.  My mom's mom raised 6 children during the day and then worked in the evenings when my grandfather got home in order to help support the family.  And my dad's mom raised four children in a poor countryside town in Italy before coming over to America and making a life for them here.  Mom's make such tremendous sacrifices for their children.  No offense to the dads out there, as you too make an impact on your child's life.  But there is something about a mother's bond with her children that makes being a mom the best feeling in the world.  I hope I am being the best mom I can be for my children.  I know they don't always show appreciation for it now but that will not stop me.  There are enough special moments to keep me going.  Here is one of those special moments.  This is an excerpt of an email I received from my daughter's teacher just a couple of days ago:

"I wanted to send you a quick message to let you know how much I enjoy having Julia in my class!! She comes in everyday with a smile on her face, ready to learn, kind words to others, and always eager to participate.  Today I had to take a half day, my daughter had a doctor appointment this afternoon.  As I was saying goodbye to the class, Julia looked up at me with a big smile and said, 'Mrs. Smith - are you putting on your Mom hat now?'  I cracked up!  I was thinking of her just now and wanted to let you know she puts a smile on my face."

Here are some updated pictures from the past month:

First Day of School

Ryan continues to struggle with his soccer skills, but I'm so proud of him for not giving up!

At 36 weeks.

Jack's first haircut!  I do hope the curls continue to come back, but he was starting to look like a girl and needed a trim!

A typical day for Julia who loves the outdoors!

Pumpkin decorating time!  The kids are super excited for Halloween.  Stay tuned for pictures in their costumes!

Speaking of costumes, here is mine this year.  I wore it a little early this year since I'm hoping baby girl Campbell will be here by Halloween!  My students got a kick out of it!  Here I am at 38 weeks.

Keep an eye out for the kids' pictures in their Halloween costumes (assuming Halloween is not cancelled a third year in a row due to some massive snow storm or hurricane).  And we will of course post pictures and an update when the baby is born.  Any day now!!!

DC

Week 163- Autism Speaks Walk

Today we braved the 90 degree sweltering weather to walk for Autism.  We had some of our "regulars" with us and even some "newbies" and despite the heat it was a nice day.  Thank you to everyone who came out to support Ryan, our family, and all those with Autism!

Ryan was very excited to participate but he did something this year that he hasn't done in the past.  He walked in front of the sign the entire way and argued with anyone on our team (especially Julia) who wanted to walk next to him.  He wanted everyone to walk behind him.

I did not set up a link for our team online this year like I have done in the past.  I just never got around to it.  I took the donations I had received to the walk which totaled over $800.  Thank you to everyone who donated!  I know there are a few more people who contacted us about making a donation.  You can mail us or give us a check made out to Autism Speaks and next week we will send it all in together for our team to be combined with the donations handed in today from our team.

Here are some pictures from today's walk...

Our 2013 walk team

Ryan and Julia getting ready for the walk.

Ryan poses with the Forgione ladies.

cousins

Unfortunately we were missing a key component to our team today.  Phil could not make it to the walk. Jack has been sick all week with high temperatures.  When his fever broke he developed the Roseola rash.  The heat and sun irritate the rash, so Jack needed to stay indoors this weekend and Phil stayed with him.  Jack has had a very uncomfortable week from whatever virus was in his body and was irritable most of the time, but we did manage to get a few smiles out of him.  

Jack put on his hat to pose for the camera!

Quick update on Ryan's appointments: he met with the psychiatrist this week and there has been another adjustment with his medication.  We are taking him off of the Fluoxetine (Prozac) in the evenings, and doing a trial of a double dose of the Focalin each day.  He will take one dose before we bring him to daycare and a second dose at school around lunch time.  The nurse will have to administer it.  The hope is that the second dose will kick in when the first dose has worn out and he will have better afternoons at school and at home.  The second dose should wear off in time for him to relax and go to bed on time. We'll see how this new regimen works out this week.  

DC

Week 161

We ended last week with uncertainty about the new medicine, Focalin, that Ryan began.  But I guess it just took a couple of days for his body to adjust.  He had a great week at school and when Dr. Hahn returned our call he suggested we keep him on it and see how he finished out the week with it.  It really is like clockwork.  Approximately an hour after taking the medicine it kicks in, and about 7-8 hours later it wears off and Ryan is as wild and unpredictable as ever.  We're happy to hear about the progress Ryan is making during those 7-8 hours. 

Here are some excerpts we received in Ryan's communication notebook this week from his special education teacher:

"Ryan got right to work this morning on his morning work.  He was one of the first ones done.  His writing about whales was very well done.  He applied something I taught and reviewed with the class yesterday.  New medicine must be working!"

"Good focusing again today, but a lot of tattling."

"Good day.  Got right to work this morning again."

"Got right to work.  Does not talk with peers at the table, but does talk to me a lot.  Today's morning work was a bit challenging, but the great news is he didn't complain once.  He had a worksheet to add three numbers.  Second, he had to write about a new sea animal we have learned about.  He only could write two sentences.  I had another student give him a book to help him and he sat right down and started to read without complaining.  In the past, he would refuse to read and write more. So happy to see this change."

While it is great to hear these positive comments, it is difficult to come to terms with the fact that we have Ryan on two different medications.  For years we have tried just about every alternative from the GFCF diet, to special doctors, to supplements, to different therapies, all to avoid medication.  We always saw that as a last resort.  This medicine ordeal is certainly more of an art than a science and it may take a long time to find the perfect mix.  

This year's Autism Walk in Westchester is on Sunday, June 2nd, with registration beginning at 9 a.m. and the walk beginning about 11 a.m., at the NY-Presbyterian Hospital in White Plains.  If you can join us please let us know and we will give you more information.  

Here are some pictures from this week:

Ryan showing off his art work at the Art Festival.

Caught them watching TV together.  What a pleasant surprise!

Happy 10 months Jack!

DC

Week 157

We had yet another extremely busy weekend.  I took the kids to see The Little Mermaid performance at my school.  They both loved it and were excited to take pictures with some of the cast members.

Also, Ryan had a soccer game and Julia had her Irish Dance Recital.  She won a certificate for her performance in class all year and she was thrilled!  And Ryan was so proud of her.  After she performed on stage he tapped the shoulder of the woman sitting in front of him and said, "That was my sister!"

Ryan continues to struggle at soccer.  This may be the last season for him until he expresses some interest in playing.  We haven't found a sport yet that Ryan enjoys enough to stay focused and actually gain skill from practicing.  But then this weekend Phil put out the basketball hoop that Uncle T bought the kids for Christmas and Ryan has been asking to practice everyday so far.  He even came off the bus today and immediately picked up the ball and started shooting.  |Now we just have to pick up a second basketball so that they can each hold their own and practice dribbling and shooting.  The sharing of the basketball has not gone well so far.

I forgot to mention in last week's blog that I was finally able to get all of the paperwork together needed to see if Ryan is eligible for services through OPWDD (Office for People with Developmental Disabilities).  We mailed it to our local office and the intake coordinator told me it can take up to two months for our paperwork to be processed and for us to hear back if Ryan is eligible.  It may take just as long to establish services if he is deemed eligible.  Our primary request is for something called respite services.  It is like "babysitting" and we are hoping we can schedule this during times when Ryan can work on his homework with the service provider.  We are hoping he will respond more positively to someone else than he does to us.  Unfortunately, even if approved, I can't see this starting before the end of this school year but we will be more than happy if something is put in place for the start of his second grade year in September.

Report cards were sent home this week and Ryan received a very typical report.  There was improvement in several academic skills and still room for improvement in some of the behavioral areas.  His reading level, which was reported as below level first quarter, then on level second quarter, was back to below level for third quarter.  Ryan continues to have difficulty not calling out in some of his special classes where the structure is different than his co-taught classroom.  We will be attending his annual review at the end of this week and I'm sure we will get more information across the board on how he is doing in regards to the testing that was completed.

We are into two weeks on the medicine (Fluoxetine which is also known as Prozac).  Dr. Hahn said it may take three weeks for us to notice any positive changes.  Ryan continues to have ups and downs, especially in the areas that the medicine was supposed to help with - his impulsivity and anxiety.  I hate to say that I feel his behavior has been worse on some days since beginning the meds.  But we will wait it out until our appointment in two weeks and then make a decision if it is working. It is a very low dose (5 mL).  Maybe this is not enough of a daily dose to make a change. I don't know any other 6 year olds on this medication to compare their weight and what dose they are on.  I guess this is something we will need to discuss with the doctor.  On a positive note, Ryan takes the medicine with no problem.  He does the syringe in his mouth all by himself at dinner time.   It has a strong peppermint taste so he immediately follows it with a drink or bite of food.  He complained the first couple of times but now there aren't any issues.

I sometimes feel like we don't say "Thank you" enough.  Just about everyday I have someone reach out to me to check in on how Ryan and the entire family is doing.  It is so greatly appreciated.  The support reminds us that we are not alone and that there are so many people that care enough about our family to continue to stay updated through this blog.  Many thanks!!!

DC

Week 156

The kids having some Easter fun with their Campbell cousins.

We have a lot to share tonight because we didn't write last week, so here we go...

Let's begin with an update on Ryan's skin.  His legs are doing much better.  There are still some residual scabs, but the two medications that the pediatrician prescribed helped tremendously.  While I'm happy that he is no longer itchy and his skin no longer feels like sandpaper, I'm annoyed that he went through these skin issues for over 2 years and the issue could have been fixed with a prescription instead of him suffering through the scratching and bleeding.  I don't know why it had to get to the point it did for the doctor to offer him some relief.

We did not take Ryan to the psychologist this week because it was opening day of soccer and at the time of his last appointment we did not have his game schedule yet to make an appointment.  It worked out okay anyways since he already had a psychiatrist appointment scheduled.  We met the psychiatrist for the first time and he agreed that Ryan be placed on some medication.  He wants to treat Ryan's impulsiveness first and hopes that will help reduce the anxiety, rather than begin with an anxiety medication.  We were supposed to begin the medication on Saturday but the doctor put incomplete information on the prescription and CVS wouldn't fill it.  They put a call into the doctor, as did we, but he did not call back.  Hopefully we will hear from him first thing Monday morning and we can begin the medicine.  Ryan will also need to have lab work done for some baseline levels, and we will go back to this doctor in a month to share the lab results and an update on Ryan.  If we see an improvement, and Ryan is tolerating the medicine, then he will give us a new prescription with refills (hopefully filled out correctly this time!) ha ha  The appointments with this psychiatrist are huge monetary investments out of our pocket so we are praying that this is the best decision for Ryan and that it helps him.

On the day of the appointment with the psychiatrist I received a message from the kids' principal.  He explained that Ryan had punched Julia in the face on the bus.  Apparently Julia had switched her seat to a place she shouldn't be sitting (Kindergartners are supposed to sit in the front two seats of the bus) and Ryan told her to switch back.  Of course she argued with him and refused to move, and Ryan socked her a good one.  A lot of drama ensued with visits to the nurse, the Principal's office, and hugs from teachers.  Here we go again with Ryan trying to enforce a rule, by breaking another one.  He is so concerned with what is going on with everyone else and it gets him into trouble.  He simply cannot control himself when he realizes he is unable to control what another child or adult does.

We've always been worried about Julia and what all of this must be like for her.  If Phil and I are so affected by what is going on with Ryan, I can't imagine what it must be like in the eyes of a five year old who may not be able to comprehend everything going on.  Julia is extremely sensitive, and it broke my heart when I read the note I received from her teacher the evening of the punching incident.  I was so choked up I could barely read it aloud to Phil.  Here are excerpts from her teacher's message:

I did not know who had hit Julia this morning when she came in from the bus.  I sent her immediately to the nurse and told her to go to the office and tell (the Principal).  If I had known I would have handled it differently.  Julia was upset because she was hit, but mostly because she told on her brother.  We talked in the hall when she came back and she told me what had happened.  I told her that it was good that she told us and then that way we could help her brother.  We talked about how it was difficult because she loves him and she said that he is mean to her sometimes.  I reassured her that he loves her very much too.  She wanted to hug him so I called into the room... Ryan came out and then gave Julia a hug and things were better for Julia after that. She is such a loving child! Let me know if there is anything I can do to help Julia.

After some email conversations back and forth, her teacher said that she would alert the school social worker and psychologist and see if someone would speak with Julia.  We're hoping they can give us some insight as to whether we should be looking into some outside counseling for her as well, just so she can openly talk about her feelings regarding Ryan and how she feels.

Our Welcome DVD came in the mail this week and the kids immediately wanted to watch it.  They are very excited for our trip this summer that Grandma Campbell is taking us on.

On the "Jack" front, he is improving slowly but surely.  We had another bronchiolitis and ear infection scare last week.  His coughing, especially during the night, was terrible.  His breathing was so labored and the wheezing was so heavy that he was back on the nebulizer approximately five times a day.  He is back down to two times a day now and is sleeping much better through the night.  We made an appointment with a pulmonologist and the earliest appointment they were able to give us was a month away!  In the meantime, the pediatrician watched one of his coughing fits through a recording I made on my phone, and she felt he was having reflux issues again.  So he is back on the Prevacid in addition to the nebulizer.  Jack will be nine months this week.  He is approximately 25 pounds, and through everything he still remains happy and smiley most of the day!

On the job front, I do not know any more than I knew a month ago.  Only time will tell as the budget goes up the third week in May.  But I wanted to share a part of an email I received from a former student.  It is similar to many other messages and phone calls I received from former students and parents regarding the news that I was one of the 67 teachers laid off in my district:

I wanted you to know that it was heartbreaking to hear that you were one of the teachers, because you were truly one of the greatest teachers I've ever had, and you've had such an impact on me as I've grown up. 

While being laid off is not an ideal situation, I feel in my heart that everything will work out for the best.  With all of the new demands and the ridiculous testing that is going on, maybe it is time for me to pursue other career options.  Or maybe this will give me the time I need to devote to myself and my family.  Like I said before, only time will tell.  We're looking forward to getting answers about my job, getting answers about Julia's stresses as a sibling of someone with Autism, answers about Jack's breathing issues, and answers about what we can do to help Ryan.  We have a LONG "To Do" list!

Happy 11th Birthday in Heaven Helen.
Have a great week everyone!

DC

Tuesday, July 6, 2010

Ryan began his preschool summer session on Tuesday.  The minivan "bus" picked him up at 7:45.  Phil followed the bus (without the driver knowing) all the way down the Taconic just to make sure he was a safe driver.  Of course I was the one who put Phil up to this task, but I felt better knowing that Ryan was okay and in good hands.  He returned home at 11:45; the driver said he slept the entire way. 

Tuesday was also Ryan's second scheduled visit to Dr. Bock.  I thought this appointment would be easier and less overwhelming since we knew what to expect, but I was wrong.  It was just as overwhelming, if not more.  The doctor gave us so much information about Ryan's test results that it was confusing.  I wrote down some notes, but I couldn't keep up with half of what he was saying.  It didn't help that Ryan's behavior was erratic.  It was good that the doctor was able to see a glimpse of Ryan at his worst, but it made for a stressful afternoon.  Dr. Bock commented that Ryan has behavioral issues with attention deficits.  We think this was his way to say that Ryan is ADD or ADHD, and I guess that will be the next diagnosis we receive from the neurologist.

The main purpose of the visit was to get the results from all of the bloodwork, stool and urine samples that were administered during the month of May. The test results included a list of things that Ryan is deficient in such as chromium, selenium, and sulfur.  He also told us about Ryan's high food sensitivity to eggs and moderate sensitivity to mustard.  Yeast was found under the microscope, and his membranes were high in calcium.  In addition, he has "bad bacteria" that needs to be treated with antibiotics and also a mild genetic polymorphism abnormality, whatever that means.  I didn't ask for copies of anything and will have to remember to do that for my next visit.  I'm also going to have to ask him to go through some of the results again because everything is now so muddled in my head.  I did a substandard job gathering the necessary information and was disappointed that I wasn't a better advocate.  I spent most of Tuesday night and Wednesday morning sulking for doing such a poor job.  In addition to the sulking, I went through all of Ryan's supplements and tried to organize them (and my thoughts).  I created a spreadsheet in the form of a checklist with the name of the supplement, the dose, and frequency so that we can keep track of which ones we have given him each day.  It is an overwhelming task and we're trying to introduce new supplements one at a time over 3 or 4 days in order to observe his behavior and note any changes that we see because of the supplements.   To get an idea, here is a picture of his supplements.  This doesn't include the prescription medications, B12 injections, and numbing cream that will be shipped to us during the week.

So those are the supplements that Ryan takes daily (many are twice a day).  From this visit alone he suggested 11 supplements (in addition to the 9 he is already taking).  Some are liquids but most are capsuls that have to be opened and the supplement then gets mixed into food.  Most often we mix them in mustard, ketchup, or peanut butter.  Unfortunately, we now have to cut back on the mustard because of the food sensitivity results.  In addition, we should be eliminating ketchup from his diet for two reasons: phenols and yeast.  Ryan is sensitive to foods high in phenols; the doctor believes this may be the cause of Ryan's sudden outbreaks of red cheeks and maybe some of his mood swings.  Tomatoes are on the list of foods high in phenols.  Ketchup also has vinegar in it, which could be causing the yeast that was discovered.  I'm not sure how Ryan will react to us eliminating ketchup from his diet.  While I don't feel we can totally eliminate it at this point, we can certainly reduce it.  We can make sure he uses smaller portions of it for starters.  We were fine with him using a lot of ketchup because it made it easy for us to mix his meds in it.  We're going to need to be more creative with getting the supplements worked in to his meals.  There is also an enzyme that the doctor suggested that we can give Ryan when he has foods high in phenols.  There are many foods on the phenols list that Ryan doesn't eat, but here are some of the foods that he enjoys and eats often that were on the list: apples, strawberries, pickles, grapes, oranges, bananas, chocolate, and tomatoes.  For those of you who know Ryan, you know that giving up some of these foods will be difficult.  Just when we were getting the GFCF diet under control, we now have to watch out for all of these foods, and eliminate eggs as well. 

Aside from the supplements, Dr. Bock also prescribed Nystatin and Gentamycin (I guess to rid him of the bacteria), both of which have to come from a compounding pharmacy.  On Wednesday morning I spent about an hour researching compounding pharmacies/pharmacists.  There are not many in NY and none within a short driving distance, so things will need to get shipped to me.  Once Ryan is on these prescription medications for three weeks, we can begin giving him B12 injections twice a week.  These B12 shots also need to be shipped to us from a compounding lab that is sterile and has the capability to produce the injections.  During Ryan's doctor visit I had to be trained (and pay $45 to get trained) on how to properly prepare and dispose of the needle, and how to administer the injection.  There is a process that needs to be followed and I'll be sure to give you more information about the injections once we start them.  Frankly, that entire part of the appointment was a fiasco and I don't want to relive it right now.  Dr. Bock's nurse, who has awful bedside manner, was the one doing the training.  I don't want to get into details, but I put a call in to Dr. Bock to discuss the situation with him because the way she treated Ryan was very upsetting to us.  I'm waiting for him to return my call. 

To top off the day, when we were finished with the appointment we met my parents (who had Julia), and Phil's mom at a restaurant down the road from Dr. Bock's office called Mazza Grill.  We arrived at 4:45 and it was good to have everyone together to talk about our visit.  Phil had called this restaurant in the morning to be sure that they could accomodate a child on a GF diet.  We asked if they would be able to make something like french fries and grilled chicken.  They said it wouldn't be a problem and they get visitors from Rhinebeck Health Center all of the time.  When we ordered the food we explained how Ryan's food needed to be prepared.  We did everything right, and yet everything went wrong.  The manager or owner came out to tell us that they could not accomodate a GF diet and that the fries are batter dipped and wouldn't be gluten free.  When we explained that Phil called in the morning to check, he wanted to know the name of the person we spoke with.  He was very condescending to Phil and we packed up our stuff and left.  The kids were upset because they couldn't understand why we were leaving; they were tired and cranky and their behavior from 5pm to 9pm was awful.  It was a very frustrating ride home and disappointing evening.

DC

Day 43

Today we drove down to White Plains for a College Graduation party. Again, it was another party that both Dawn and I were able to enjoy. There was food there that Ryan could eat and we also brought extra food just in case. He did not ask for anything that he could not have and had a great time. He played with his sister and cousins and had a blast with the bubbles and water balloons. He even got wet and only asked once to change his clothes. The great part was that he used to be so sensitive to being wet that we would have to changes his clothes immediately or he would go into a complete melt down. While he did walk a little funny with the wet clothes he kept them on until they dried.

We got home late and he was so tired and cranky that he really gave us a hard time taking the medicine. But his skin is getting so much smoother and his melt downs are now age appropriate that we really can not complain.

PC

Day 25

The GFCF brownies are in the oven cooking. We're sending them to daycare with Ryan so that he can celebrate his birthday with his friends at school. They smell good and I even added some mini chocolate chips (GFCF chocolate chips, of course).

Ryan did well taking his medicine tonight. He's developed a routine already. He has to sit in one particular spot on the kitchen counter. And he must take it in a syringe with me holding his chin. And after each small push of the syringe he swallows, takes a sip of water, and then continues to take the medicine. I tried to give it to him tonight in the opening between our family room and kitchen so that he could continue watching a show (another bedtime ritual) but he said, "No mama, I have to take it here" and he proceeded into the kitchen to his spot at the counter, where I had to hoist him up.

And we were able to get a third day of stool samples. We packaged everything up according to the directions, and FedEx is picking up the box tomorrow. I was getting nervous that we weren't going to get the third sample, and the lab has to receive it within five days of the first sample. So tonight was our last chance, and he pulled through for us! What a good boy!

Tomorrow is Ryan's birthday; 4 years old! Many friends and family members will be wearing our official t-shirt of The Ryan Express.

DC