Friday, March 30, 2012

In the Throws of Allergy Season in Tampa

Allergy Season - Allergy Testing - Immunity 

Allergy Season in Florida:
The height of the allergy season in Florida is 2/15/12 through 4/15/12 and then again for children in August and September.  Finn always seems to get sick in February/March and this season was no different.  First his eyes were puffy and red.   He was already on Zyrtec, Claritin, Allegra, and Nasonex.  We had also been doing saline spray and we started back with Tobramyacin a couple of weeks ago.

The week before last hit hard.  Poor guy had a full blown sinus infection in what appeared to transcend in 24 hours.  Eyes were swollen, low grade fever, he was frequnetly holding his head and wincing, nasty cough, and of course the never ending congestion that cannot get out on its own.

I called his allergist - she was out of town.  We saw his pediatrician and he started Finn on D-Allergy and Cipro.  Finn is essentially out of antibiotics he can take.  This is his last one before he has to get admitted to the hospital and receive them via IV.  We also saw his ENT and she agreed that based on the culture Ciprofloxin was the thing to do.  We also changed his allergy medication to a stronger medication - Singulair.

On Friday, I told Dan Finn smelled like blood to me and sure enough Saturday and Sunday he was blowing out blood.  He had to miss school for the first time (other than one day for surgery) and miss soccer on Sunday.  Camila, my child who never gets sick, had a 103.5 fever by Friday evening and was inconsolable for much of the weekend.  She ended up having flu like symptoms and a double ear infection. 

Its really scary for us when Finn gets sick like this because it is so hard for him to recover and makes us anxious that he will need another surgery to correct his problems.  He has had so many issues with his sinuses/ears.  This morning he had nasty drainage from his left ear.  His left ear is the one that had the benign tumor removed from it so it kind of has a natural ear tube right now - the ear tube being a hole from where the tumor was.  His right ear had no drainage so automatically we think that his ear tube is blocked and he will need it replaced and Dan is off to call the ENT.  It seems like a never ending cycle with him and our ENT is great but she is relatively new to Finn and hasn't seen him go through all of his this.  I think she thinks we are crazy!

It has been a rough couple of weeks of no sleep and sick babies!  The good news is that one of the best remedies is swimming in a salt water pool so we have been getting a lot of pool time in on doctor's orders.

I think we finally learned a valuable lesson that during these rough allergy months we will start Finn on something stronger than over the counter allergy medications and we will start Camila on an over the counter allergy medication at the beginning of February.  I look around and everyone seems to be having allergy symptoms even people that normally don't have allergies. 

Allergy Testing
A word of caution...if your child has had allergy testing, especially where they simply draw blood and test it, it is not always accurate - mostly false negatives.  Finn's had about 8 allergy tests by now and there are only three constants: he is allergic to peanuts, milk and cats.  Some allergy tests also show he is allergic to soy, corn, wheat, elm, eggs and dogs.  Its frustrating to no end, but we do typically go by his reactions and his last skin test.

Immunity

Finn is still a little mess, but improving.  His immune system is weaker than a "typical" child's so it typically takes him longer to recover.  Finn has his immune system checked regularly and has additional vaccinations to help boost his "titers."  One thing that is frustrating is that he did just have a vaccination that is supposed to prevent him from getting sick with the exact bacteria that he is sick with.  We just did the follow up blood work to see if the vaccination worked and of course...it didn't.  Finn has his immunology appointment in a couple of weeks and I'm interested to know why it doesn't work on him.  

Good news is only a couple of more weeks and allergy season will be past us!

Tuesday, March 13, 2012

Respite Care

Aahh respite care.  We are all in need of respite from time to time, especially special needs parents.  I've heard the divorce rate among special needs parents is anywhere from 90% to 97%.  This is so sad to me, but its not hard to see why. 

You are sleep deprived.  You are financially strapped because having a special needs child is expensive.  You spend a lot of your time at doctors offices, hospitals or on the phone with health insurance companies making arguments to have get things covered.  You worry about the time you spend away from work at these appointment.  You may not agree on treatments for your child or the school your child attends. You are physically and emotionally exhausted and it seems like you have no time for each other.

Then comes the issue of leaving your child with someone who may not be fully equipped to handle their needs.  Well, that is not an issue anymore.

I feel we have been lucky that we have family visit often so Dan and I can get away even if it is just to bowl a quick game or two or have a quick bite at a restaurant nearby.  Sometimes after the kids go to bed, Dan and I will chill on our patio by the pool with a beer and feel like we did get away without leaving.  This isn't exactly the norm though.  Most nights, the kids go are in bed and asleep by 8pm and we scarf down dinner and then pass out - LOL. 

The good news is that there is lots of free respite care out there, you just need to know where it look.  There are some really good organizations out there  I recommend checking out http://www.nathanielshope.org/events-programs/buddy-break/locations-and-dates/  The program is called Buddy Breaks organized by Nathaniel's Hope and is typically held in local churches.  They have locations in FL, GA, CA, KS, MD, VA, TN and MI.  We have one near our house that we haven't yet used, but I have several friends that have used it and they are very happy with the care.  They will take siblings as well, but I believe they have to be at least 4 or 5 years of age. 

By the way, if you have not heard of Nathaniel's Hope, I encourage you to explore their website.  They have a ton of useful information for parents of special needs children.


For anybody out there in GA, my mom sent me this document that has a listing of camps/respite care.  I haven't found one similar for FL yet - would love to get my hands on it!  http://www.metroeastglrs.org/glrsDOCS/2012_Summer_Recreation_Directory.pdf




Monday, March 12, 2012

Summer, Sleep and Ice Cream!

I love summer...I know technically its Spring time, but I already have summer on the brain.  I love living in Florida during the summer even though it is hot!  I love the heat, I love driving with the windows down, I love summer time feel good music, and I love summer time ales!  I love going to the beach and being outside at all of the wonderful parks Florida has.  We got an early taste of summer last week and over the weekend. 

Our pool got warm enough (thanks to the heater) and the kids swam all week and weekend long.  I love that both kids can now swim "independently" with their puddle jumpers on.  We still have to pay close attention but it is nice to have two arms free!  The best thing about the kids swimming is that they both sleep through the night!  For 3 1/2 years we have had at least one kid up in the middle of the night until last week.  We got three nights of uninterrupted sleep!!!  Well, it would have been uninterrupted if my body wasn't trained to get up every couple of hours and listen for the kids.

We also went to Busch Gardens yesterday.  The kids love Busch Gardens.  Finn is obsessed with the train and we couldn't have either ridden it or watched it all day.  The most exciting thing about this trip to Busch Gardens is that Finn is finally (well sort of) tall enough to ride the Air Grover Roller Coaster (technically you have to be 38 inches and he 37 but add his shoes and poof his hair up and he is really close to 38).  He was so excited to get on the roller coaster and I sat with him up front.  He was holding his hands up and saying wee until the roller coaster started and then I think he got really freaked out.  I mean, it is a little roller coaster, but it is a real roller coaster and it goes fast!  At the end, Finn's face was crumpled up and he was either saying "done" or "again."  I'm not sure because he was repeating it so fast.  We got off the roller coaster and he hung around it pointing at it for some time and then he dragged Dan back to it, they got seated and as soon as the lady came and tightened the lap bar, Finn freaked a little and they got off.  I'm still impressed he rode it the first time!

He and Camila also drove the car around for the first time.  I've been worried about letting Finn do these independent rides because he doesn't always follow instructions, but he did a GREAT job!!!

Lastly, one of the things I love most about summer is ice cream!  I fell in love with my husband when he took me to get ice cream for breakfast on one of our first dates.  I mean how awesome is that...you know you have reached adulthood when you can eat ice cream any time of the day.

So, we usually buy Finn allergy free ice cream - So Delicious makes an awesome soy free, dairy free, peanut free, and gluten free ice cream.  It is really yummy, but what I love to do is make our own allergy free ice cream:

1/2 Cup of Allergy Free Milk (we use vanilla flavored almond milk (unsweetened)
1 tbsp sugar
salt
ice cubes
1 quart sized zip lock bag
1 gallon sized zip lock bag

All you do is put the milk with the sugar (and you can add syrup here if you want for different flavors) in the quart size bag and zip it tight.  Then put that bag in the gallon size bag.  Add a bunch of ice cubes and salt and close the gallon size bag.  Shake the bag for about 5 minutes.  You may want to wear oven mitts.  Just like that you have ice cream.  The kids like to add Enjoy Life Chocolate Chips.  The ice cream is really good and you can let the kids shake the bag if they are old enough and don't lose interest.  I love being in control of what goes into my kids' food.

Here are some pics from this weekend:

Finn and Camila driving at Busch Gardens

Finn loves his "Na Na."  She doesn't seem to mind him holding her hand when she is passed out after a long day!


Finn in the center of it all during the soccer game.

Finn admiring his medal he earned for trying real hard this week!




Friday, March 9, 2012

Special Olympics


The Young Athletes Program (Special Olympics) starts next week.  Finn is going to participate this time around, although he will have to miss the first two weeks.  I'm really excited to start getting involved in the Special Olympics!
 
The Young Athletes Program is an sports/play program for children ages 2-7 with intellectual disabilities and their peers, designed to introduce them into the world of sports.  The benefits of this program have been proven - the activities help the children improve physically, cognitively, and socially.  The program raises awareness of the Special Olympics program.
 
There are two levels of play the program addresses: Level 1 includes physical activities focused on developing fundamental motor tracking and eye-hand coordination.  Level 2 concentrates on the application of these physical activities.  The activities consist of foundation skills, walking & running, balance, jumping, trapping & catching, throwing, striking, kicking, and advanced skills.

I am so excited that Finn is able to participate this time around.  Our county has two sessions - fall and spring at no cost to the families that participate. 

Thursday, March 8, 2012

Hyperbaric Oxygen Therapy - Week 6

Week 6 of Hyperbaric Oxygen Therapy is nearly over and only two more weeks left - whoo hoo!!!  Dan and I are convinced we have seen a difference in Finn and most of it is hard to explain, but he seems more alert, his reaction time seems faster, and he is definitely saying more words.  We have started researching the "chambers" to see if it makes sense to buy one - I just need to figure out how I'm going to fit it in with the home decor LOL.

I am amazed and brought to tears every day with new words that Finn is saying.  He is definitely over 100 spontaneous words now and I just can't wait to see where we can go from here.  Some new ones are "I'm ready," "squirrel," and "Henry (as in the green engine)." The pronunciation isn't ever perfect, but its close enough that I know what he is saying!

Unfortunately, Finn probably has an impacted sinus infection and we are out of his Tobramyacin that you can only get from a special pharmacy.  But we have a wonderful ENT that called it in and we should get the new supply tomorrow and can start treatments again.  Tobramyacin is an antibiotic used on cystic fibrosis patients.  Finn does not have cystic fibrosis that we know of (Finn does not sweat and the proper test for CF is a sweat test), but his sinuses act in a similar manner.  I am hoping once we give him a full dose of treatments it will clear it up.  Even after having complete sinus surgery, we still have problems with his sinuses and are hoping he does not have to have another surgery. 

We are waiting on some blood work to come back from last week that will let us know how is immune system is doing.  We get this blood work done fairly often.  Some vaccinations that Finn has received don't take effect and this blood work will tell us if we need to get him re vaccinated. 

Overall, he is doing great.  We have a slew of doctor apts coming up: eye doctor to monitor his hydrocephalus (the eyes are the windows to the brain), Shriners for orthopedics, Allergy/Immunology, and ENT follow up.  Not to mention his quarterly audiology apt and I really need to get him back to the dentist but have been avoiding it as I know we need to seal his teeth and I think we will have to sedate him for it - yuck!

I'm definitely ready for Finn's spring break.  I miss the little guy during the day.  Especially now that it is gorgeous out and our pool is up to over 80 degrees!

Here is a picture of Finn practicing smiling for school picture day :)  Of course, Camila had to sneak in.


Tuesday, March 6, 2012

Soy-Yer Dough (Allergy Free Play Doh)

Kids love to play with play doh, but when your child has allergies to gluten or is on a gluten free diet, playing with regular play-doh is not an option.  Especially if your child puts everything in his or her mouth like mine do!

Your other options that you can find at a regular stores aka Target or Wal-Mart just aren't the same.  Moon Sand is awful and messy.  Modeling clay and Silly Putty are great for muscle development, but you can't put clay or silly putty into those crazy little play-doh heads and make hair "grow."

You can definitely make your own with gluten free flour, but if you are empty on time I encourage you to check out Soy-Yer Dough.  It is gluten free, wheat free and vegan.  You can also buy a non-soy version as well which is what we get for Finn and they have unscented and color free variations too.  It is really close to regular play-doh, but I actually think it is a little better because it is not quite as messy.

You can check out the company and order products at http://store.soy-yer.com/default.asp




Monday, March 5, 2012

Volunteering

Parenting Magazine has a really good article in its March 2012 issue.  It is tucked away on page 44 and titled "Group Hug" by Margaret Hargrove.

The article talks about how families benefit from volunteering together as a family and specifically talks about helping those with special needs.  It goes on to talk about how volunteering with organizations such as Special Olympics, Easter Seals, or the Miracle League help the "typical" children see that disabled children, not as different, but as their friends.   

You can check out ways to volunteer as a family at http://www.thevolunteerfamily.org.

I have been meaning to contact some of the local high schools around here because I am certain that students that are "Junior Beta" or "Beta" need volunteer hours.  My mom suggested this the last time she was in town because of my struggle at dinner time.  I am trying to teach both of my children to eat using their utensils, drink from an open cup, and make it through meal time without 95% of the food on the floor.  Dan typically isn't home from work when the children are hungry so its tough with just me.  In addition, I would love to be using this time to focus in on PECS with Finn.  What a wonderful idea to get a student to come to the house and volunteer to help the children with eating or help Finn with PECS.  If anyone knows of anyone that needs community service hours, let me know. 

I have been interested in getting Finn involved with the Special Olympics some time now and it turns out a mother of a player on Finn's soccer team helps oversee the Young Athletes program for our county.  She did say they are in dire need of volunteers.  I am looking forward to getting Finn signed up.  Although I believe the age they can start to compete is 6, he can start learning basic skills that coincide with what he is doing in therapy: kicking, balancing, walking across different terrain, etc.


Friday, March 2, 2012

Trisomy Awareness Month

I guess there probably is an awareness month or day or week for just about everything, but this month, March, means a lot to me.  It is Trisomy Awareness Month.

You never know what is going to become important to you in life until it does.  Before we had Finn, I rarely heard of other parents having children with rare syndromes and now that at I am a parent of a child with two rare syndromes, I have a whole new understanding of how many parents there really are that have faced or are facing similar situations.  There are probably hundreds of thousands of  sleep deprived parents out there spending hours trying to figure out what should go in their child's IEP, battling it out over the phone with health insurance companies, or crying tears of joy because their child just said something that sounded like "towel" as he or she pointed to a hand towel.  Some of these parents have become some of my closest friends.

So, guess the whole point of Awareness months are to make people aware.  The thing that I want people to know about Finn is that he is not too much different than any other three year old.  He is smart, has a great memory, is funny, mischievous, and curious.  He likes trains, cars, being outside, books, and art.  His favorite foods are cookies and more cookies.  He likes music, dancing, and both loving and pestering his sister.  He may not be able to tell you what he knows, but he can show you.  Finn has been through a lot in his three years and it has made him tough, but he still likes to hold your hand and cuddle.  Finn wants to be loved and liked by his peers just like any other child.  


Trisomies (other than Down's Syndrome) are so very rare and some are simply "not compatible with life."  There are two other children with Trisomy 9p (that we are aware of) that live in Florida just so you get an idea of how rare the syndrome truly is.

There are a ton of support networks out there for parents with children with Trisomy.  I belong to a chromosome 9 support group on Facebook.

 My top three websites for information on Trisomies:
"SOFT" Support Organization for Trisomy http://www.trisomy.org.  They have an annual meeting which we look forward to going to one of these days.

The Chromosome Disorder Outreach www.chromodisorder.org provides information to parents on their children's syndromes and can get you in touch with parents that have children with similar karotypes.  This website also provides information on the specific chromosome including what genes are where. 

Unique http://www.rarechromo.org is another organization that provides disorder leaflets and can help you meet other families across the globe.

There are many blogs to follow on individual journeys and other websites that provide some general information.

There are a lot of slogans out there for Trisomy Awareness.  Here are some of my favorites :)