Finger Puppets

Now that I have children, I really wish I was craftier.  I love making art...I love to paint (although my easel hasn't made it out of the closet in a while), but being craft is different than being artistic. 

I try and do something "crafty" with them every week and it is really making me wish I took Cut and Paste 101 in college.  This week, we are making finger puppets.  These are so darn cute and super easy - you don't need a pattern. 

Essentially all you need is some felt in different colors, a hot glue gun, and wiggly eyes and whatever you think would make them look cute.  I just started cutting the felt in large finger shapes to make sure I would have enough room for my finger to fit inside after I hot glued the edges together and then I simply had the kids help me decorate them.  They aren't "perfect" but they are a hit.

This is great idea for those who are working on isolating the pointer finger in occupational therapy.  Also, make the finger puppets to go along with whatever your children are reading or learning in school to help reinforce what they are learning. 

Tympanoplasty Coming This Summer

Finn has to have another surgery this summer.  It absolutely sucks and why we work so hard on keeping him healthy.  Basically the sinus infections he had recently left debris in his ear that cannot get out on its own or with the equipment at the ENT's office.

Since the ENT has to clear what is in his ear anyway, she is going to go ahead and fix the perforation in his ear as well.  The hole makes up 1/4 of his ear drum and it was caused by a non-cancerous tumor that grew in his ear also known as a cholesteatoma.  Skin essentially grew in and around his ear tube and instead of the skin pushing the ear tube out, it formed a tumor.  The ENT removed the tumor last October which is what caused the hole.  She didn't want to repair the hole until he was around 5 because typically kids start outgrowing ENT issues/get healthier at around the age of 5, but since she has to go into that ear anyway, she might as well fix it now.

The procedure is called a Tympanoplasty.  She will make an incision along the back of his ear and take some cartilage and patch the ear drum.  The procedure will take an hour and half to two hours and he will have it at the hospital in lieu of a surgery center.  We will see the ENT again in July before we schedule it.  I don't know too much about it other than that.  Hopefully his hearing will improve in that ear since his hearing has been getting worse. 

The ENT also wants us to get him cultured every time he gets nasal stuff.  The culture always comes back positive for bacteria and of course it is never the normal bacteria.  The last one was a bacteria normally found in GI areas so the thought is he is having reflux again and bacteria is getting up into his sinus cavity.  We don't think he is having reflux often, but we do know he still does occasionally.  It definitely isn't like the old days where he had both vomiting and reflux issues.  We are putting off going back to the GI because frankly, they tell us the same thing every time we go and the next test they will want to do is a PH test and we aren't ready for him to do that.  However, if he starts getting sick again, then we will have no choice.

Not that this week was entirely bad...Finn said "I'm sorry" to Camila clear as day.  He pushed her off the train table after Dan and I caught them both up there dancing.  Poor Camila had just a little fall with lots of  drama.  It was almost worth it to hear Finn say "I'm sorry."  Sorry, Cam - just know you took one for the team :)  We also scoped out a new place to do hyperbaric oxygen therapy treatments and did some negotiating on the price and I finally got Finn on the FL medicaid waiver list. 

Hopefully better news next week!  At least we have no doctor apts next week and his sinus related medication has gone from 6 different medicines every day to two medicines.  So looking forward to a break from doctors for a while!  Only well visits and scheduled follow ups please, children :)

Florida Medicaid Waiver

I first heard about this waiver about two years ago.  For those families that are not eligible to put their disabled child on medicaid because they make too much money, this is supposed to be an option.  The thing of it is...no one really knows how to get their child's name on the list, how long the wait is, and what agency actually assists you in doing this. Its like an underground thing that no one really talks about, but everyone has heard something about it.

I started looking into it and didn't get very far and eventually gave up.  I was recently inspired to pick that baton back up and have spent the last couple of weeks on the phone with our government - Medicaid, Social Security office, Department of Family Services, etc.  I can't tell you how many people I talked to, how many times I left messages and didn't get return phone calls, and how many times the phone simply just rang and rang and rang.  No one knew what I was talking about.

I kept googling like crazy and finally while I was on my son's school website, I noticed a link for the Agency of Persons of with Disabilities.  I found the contact for our county and left a message last Friday on her voice mail.  Well, guess what, this morning she returned my call and even better - she is the person that signs us up.  So, Finnley will officially be on the waiting list for the medicaid waiver.  She did warn me that the wait time is anywhere from 5 years to 10 years.  Yes, that is right years.  I had actually heard the wait was 7 years, so this didn't sound far off. 

This won't pay for everything (it helps with therapy services not medical) and you have to prove an intellectual disability.  In the state of Florida you cannot prove this until the child is 5 years old and the school does an IQ test.  However, if your child has a known condition that will most likely cause an intellectual disability, then he or she can get on the waiting list earlier than 5. 

I'm not an expert in this so as I learn more, I will share. 

http://apd.myflorida.com/contacts/

Brain Balance

One of the worst phone calls I ever received was when Finn was about 14 months old.  We had already learned that he has Trisomy 9p and the 9p24.3 deletion, but at this point in time we were making the rounds with the specialists and learning more about some of the specific problems he has.  We knew he had two heart defects, hearing loss, orthopedic issues, urology issues, GI issues, developmental delays, swallowing/chewing issues, etc. and somehow I took most of those things in stride.

Finn's neurologist called me at work.  His brain MRI results were in.  I closed my office door and listened hard.  The doctor said he needed Dan and me to come in and talk to him.  I told him I was about to leave to travel on business and couldn't come in for another couple of days.  He started going over the issues over the phone:

• Atrophy or encephalomalacia of the mesial temporal lobes and mesial temporal sclerosis
• Arachnoid cyst in the mid to inferior posterior fossa
• Prominence of ventricles and the extra-axial fluid raises the possibility of hydrocephalus
• Gliosis or dysmyelination in the right lateral ventricle
• Sinus and mastoid inflammation

Essentially, there were a number of problems that need further attention.  That was a sucky day.  The range of emotions I felt was crazy.  I talked to my older brother on the phone and he reminded me that none of this changes who Finn is and he is still the same Finn.  Of course I knew this, but for some reason, hearing this helped.

We were referred to a neurosurgeon and long story short - we are not doing surgery on Finn.  He may need a shunt at some point, but the fact of the matter is he is only showing mild symptoms right now and the poor kid has already been through 8 surgeries and had to be sedated for other procedures multiple times.

All of this thought, really makes me wonder why Finn is doing remarkably well given his MRI results and then I wonder why children, especially children with ASD or other neurological issues have normal MRIs.  The neurosurgeon didn't have an answer for this.  Then I heard of Brain Balance that really aims specifically at children with exactly this issue: normal MRIs but many neurological problems.

I stumbled upon an article in one of those neighborhood news articles about Brain Balance in Oldsmar.  I'm really interested to hear if anyone has done this or wants to explore it.  They have a free parent event coming up on Saturday, May 12th at 10am.

From what I understand they take a holistic approach to really find out what part of the brain is not functioning as it should.  They start with testing - not to label the children, but to look for patterns in their brains.  They look at nutrition and do a complete work up - blood/urine/stool (we did this for Finn and I do recommend it).   Essentially, they are then placed in an after school program that is a 1 to 1 ratio that lasts for 12 weeks.  The testimonials are amazing, but wondering first hand how expensive it is and if the results are as impressive as its website says they are.

Here is the link to Brian Balance http://www.brainbalancecenters.com/

Our "Typical" Child, Camila

We knew we wanted more than one child.  Dan always joked of wanting a baseball team and all the girls that came in between.  I was thinking more along the lines of three, but we definitely wanted more than one.  When Finn came along, I knew we had to rethink our previous vision.  Let's face it, having a child with special needs and medical issues takes a lot of your time, money and energy.  Yet, I knew we had to have at least one more :)

From the moment Camila was born, I could feel the special bond she and Finnley shared.  Finn just new Camila was part of the family.  He totally understood and he loved her! 

 
I took 12 weeks of maternity leave and I was lucky to have our nanny come three 1/2 days a week to help.  Most of the time though, I left Camila with the nanny while I took Finn to doctor appointments or to therapy.  I felt really guilty that I slighted Camila of some of our bonding time.

I realized quickly with Camila that I had no idea what I was doing.  I felt like a first time mom all over again because everything was so different than it was with Finn.  She latched on right away, she slept through the night fairly quickly (although this changed), she gained weight, she didn't have reflux, her joints weren't so loose, etc...All of those baby books I through out the window when I had Finn, I brought back. 

We only went to doctor apts for well visits.  When we introduced table foods she chewed by herself without a year of therapy to help her chew!  She rolled early, crawled early and walked at 9 months.  At 16 months she says more words than Finnley does and she signs about another 50 plus.  She runs, she jumps, she kicks a soccer ball and she can swim on her own.  Things that took Finn so much work and repition to acheive she just does naturally.  BUT we celebrate each of her milestones as much as we celebrate Finn's.

Camila simply sparkles.  She loves shoes.  She loves being funny.  She loves shoes.  She loves swimming.  She loves shoes.  She loves playing with Finn's trains when he is not around.  She loves shoes.  She loves Elmo.  She loves shoes.  She loves playing with my hair while she falls asleep.

One of the best things about me no longer "working" is that I get one on one time with Camila while Finn is at school.  I worry about things I have read about "typical" siblings and how there is a high depression rate due to something similar to Guilty Survivors Syndrome.  I know she doesn't understand why we have to spend so much time running Finn around to the doctors or therapy now and she may not for a long time. 

I love watching Finn and Camila together.  They are basically at the same level right now with most things and they feed off each other and they both learn from each other - the good and the not so good.  There are areas where Camila is already more "advanced" than Finn.  I thought this was going to be hard to watch because I knew one day it would come, but it isn't as hard as I thought it would be.  I'm so proud of her and the fact that Finn is learning from her is a wonderful thing. 

I sometimes miss picking Finn up from school early as we did for 8 weeks.  As soon as Finn would enter the hallway, Camila would run down and give him a big hug and kiss.

I hope Camila grows knowing how very special she is and how wonderful she is.  I don't want her life to be all about Finn's challenges, but I do hope that they remain close.  One day, Dan and I will sit her down and explain Finn's Syndromes and I don't know what that conversation is going to look like yet, but I do know her feelings for Finn will never change. 

I don't know if we will have a third or not.  I think we learn towards not, but we aren't quite ready to get rid of the baby stuff just yet.

"Mirt" and "By"

What a strange feeling...to wake up at 4 am with your child standing by your bed shouting "Mommy" "Mirt"  I woke up very confused and figured I must be dreaming.  But sure enough, Finn was standing right there asking me for milk in his not so inside voice.

He pulled my hand, led me into the kitchen, devoured a glass of Almond milk and then asked me for a "by" aka "bar" as in granola bar.  I gave him a granola bar and he led me back to my bed and he crawled in next to my husband and fell right back to sleep still holding on to the uneaten bar.

I couldn't help but smile and chuckle to myself.  Finn has never come down the stairs by himself in the middle of the night.  Not only that, he found me and and then verbally ask for something specific that he wanted.

Long gone are the days of him waking up every 20 minutes and having to put him back to sleep via rocking or holding.  Long gone are the days of spending the night by his side knowing you were not going to sleep at all, but that as okay as long as you heard him breathing well.  Gone are the days of wondering if he was ever going to walk.  Gone are the days of being scared to give him something to eat or drink because he chokes and aspirates.  Gone are the days of wondering if he will be able to say anything at all when you just want to hear "mommy" so badly.  
 

 

Allergy Friendly Easter

Finn is allergic to just about everything that goes into Easter candy...dairy, soy, corn (including corn starch and corn syrup), possibly wheat (gluten) and peanuts.  On top of it all, the kids are vegetarian.  This makes giving them any kind of "fun" food a tad bit difficult.

I was going to order allergy free chocolate for the kids for Easter this year, but I cannot believe how expensive the bunnies are!!!  They are ridiculous!

I made these chocolate lollipops using Enjoy Life Brand Mini Chocolate chips (you can get the chocolate chips at Publix and Wal-Mart, but I usually buy them at Nutrition Smart or Whole Foods - for some reason they are cheaper there.  I bought the candy molds at Target for $2.00.  I wish I got a better picture of them before the kids devoured them, but they turned out really cute and it was so easy!!!  I just melted the chocolate chips in the microwave - 20 seconds on power 5, stir and repeat and poured them in to the molds.  Put them in the refrigerator until they set.  How easy!!!

I buy Enjoy Life brand a lot for easy on the go items when I don't have time to make allergy free things such as cookies, granola bars, etc.   Both kids love their stuff and they are free of the 8 most common allergens.

I also bought them Surf Sweets Jelly Beans.  I found these at Nutrition Smart off Dale Mabry and on-line.  They are the only vegetarian jelly beans I could find and they are organic, gluten, casein, and soy free.  They are really yummy!

Hope everyone had a great Easter!  Both of my little bunnies made out like bandits!

I Love Shriners!

I love Shriners.  Even more than loving Shriners, I love that my husband took Finn to his last Shriners appointment because Dan is the resident orthotic expert in our house and those appointments are very long.  With two free spirited kids and just me...I lose my patience!

The best news from this appointment is that Finn's feet and ankles have improved so much he no longer needs to wear braces and now only needs shoe inserts!!!  No signs of Kifosis or Scolios yet so that is wonderful news.

We will always have to look out for his joints as they are lose and flexible and we just need to continue making sure he doesn't dislocate anything.

I was looking back on pictures of Finn from a couple of years ago.  His fists were always tightly clenched and when he opened his hands his fingers seemed to go in every direction and could literally hit the back of his hands.  We had a lot of recommendations to splint his hands so he didn't have permanent damage from keeping them in tight fists, but we didn't.  Instead, I would massage his hands open every night and use a hair brush to brush his hands - a great trick I learned from a colleague at work.  Looking at his hands now, you would probably say something is off .  His joints are so loose and hyperflexible and his pinky fingers curve inwards, but at first glance, most people wouldn't even notice.

I'm so pleased to say that a lot of the orthopedic issues are resolved!  We don't need to go back for a solid year!  I'm so excited about that.  I'm so happy for Finn :)

Hydrobaric Oxygen Therapy Done with First 40 Sessions

Dan and I cannot deny that we have seen positive results with the HBOT treatments.  I wish we had an empirical test to prove it rather than just our personal observations, but nonetheless, we are seeing Finn do things and hearing him say things that encourage us about his future.  We got his quarterly progress report from school the other day brought me to tears.  They talk about the substantial improvement in his new words, his repeating words, and his receptive language. When Finn started school in September, he didn't say anything (even though he had a few words at home).  Slowly, he was prompted to say "hi," "bye," and "yeah."  Now, he is trying to repeat everything and he uses multiple spontaneous words.

The oxygen will stay in his cells and continue working for a couple of months and then we will need to start treatments again.  We are now doing research into buying our own chamber.  Driving Finn to St. Petersburg 80 plus days a year is just out of the question and the cost to rent a machine or to pay for individual treatments is outrageous! 

I think Finn is going to miss going to Chamber of Hope.  He met some friends and was a good helper.  I think he actually liked getting in the chamber and knew within a few minutes of when his session was over.  I think he brightened up all of the volunteers days as well.

We are trying to figure out how we can help Chamber of Hope in a large way.  You listen to the stories of the children and adults that have benefited from HBOT and its amazing!  Chamber of Hope will take basically anyone for free treatment without question.

I am so grateful that we found this place and that it has helped Finnley.  My parents were just here visiting and Finnley said "Hi Grandpa" for the first time.  He got excited about the Easter Bunny coming this year as he and Camila walked around the house with bunny ears saying "bunny."  He isn't speaking sentences, but we know he will!  

Sweet Kaleb

Kaleb is one of Finn's new friends.  He also has Partial Trisomy 9.  Kaleb has been in and out of the hospital for a couple of months with fevers and anemia and no one has been able to provide Kaleb's parents answers as to the cause.  Yesterday, Kaleb had blood work come back showing multiple issues and concern that he has leukemia. This morning Kaleb will have a bone marrow sample taken and tested. 

His parents have had a lot of sleepless nights lately and I am hoping they get answers and can start Kaleb on the road to recovery. 

When I look at Kaleb I am reminded of Finn at his age.  The similarities are undeniable.  They could pass for brothers and both have sweet souls and smiles that can brighten anyone's day.  I know a lot of what they have been going through, but this is far above anything we have gone through with Finn.

I'm reminded of how life can change so quickly and of how little is known of Trisomy 9.  When Finn was smaller, his liver was enlarged for unknown reasons and we had to rush him to get blood work and ultrasounds which came back basically fine and in time, his liver went down to normal size.  But while we were waiting for additional testing the research I found showed that there is a correlation between leukemia and other cancers and Trisomy 9.  Even with the human genome and further knowledge of what goes on on each chromosome, there is still not enough research done on people with Trisomy 9. 

My heart goes out to Kaleb's family and to Kaleb.  Please keep them in your prayers and send positive thoughts and warm wishes as they await answers.