I recently had to collect some of Finn's old standardized test scores to send to the Department of Persons with Disabilities. I did not to look at them because I have learned over the course of last three years, that they don't mean anything to me.
Finn had his first standardized test at age 6 months. Sounds crazy, doesn't it? Early Steps did the test and the two sweetest ladies worked with Finn and me. At this point, we knew Finn was delayed, but at such a young age, its tough to prove it as milestone ranges are large.
We actually wanted Finn to "fail" this test because we knew he was delayed and "failing" the test would mean that he would get services. Of course, I would prefer that he had not developmental delays and we would not have even had to take he first step and get him tested, but since we were there...I hoped he failed (but not too badly). He ended up barely failing. I think the ladies had to help him fail and to them I am very grateful.
Finn has had multiple evaluations and tests since that time and my best piece of advice for when your child is going through these tests and you are handed the results...don't get down. Take it all with a grain of salt. If your child is improving over time...that is what matters. We have had wonderful therapists do the evaluations right before certain cut off points to make sure Finn scored lower so he could continue getting the services he was getting.
I will be the first to admit that I have had meltdowns over his scores. I mean, at Finn's real age of 33 months, his expressive communication age was equivalent to a 16 month old. Its really hard not to let that bother you.
Sometimes you may get an Early Steps coordinator or a therapist or some other evaluator that asks you ridiculous questions. I will never forget one Early Steps coordinator we had that came to the house. She asked if Finn says any words. I said no and she bubbled in the answer. The next 10 -15 questions were all related to expressive verbal language. I was welling up with more tears with each questions and I finally said if you have any more questions regarding Finn's verbal language, please don't ask and just bubble in no. This was so frustrating and I was emotionally exhausted before the test was over. This is not typical of an evaluator and if you run into this scenario tell them to stop and ask for someone new.
We have been told many times in Finn's life that the older he will
get the broader the separation will get between his peers and him. It
makes sense - when you are comparing kids at 12 months. The other child
may be at a 12 month level while Finn is at an 8 month level, but at 33
months - Finn was at a 16 month level. The difference grows
exponentially over time.
I have made peace with this, but I also don't let this handicap
Finn's potential. Often times, doctors or therapists or school
psychologists tell parents what their child's potential is. Don't
listen. Be real with everything, but also hold high expectations for
your child. I think so many parents give up when they get bad news and
its detrimental to the child...you have to help your child reach his or
her full potential and no one knows what that is.
I love going to Finn's neurology appointments. That statement
sounds pretty crazy as I'm typing it, but its true. I love his
doctor. He is so honest and he listens to every detail we have to say.
He does research before we meet with him. It's so refreshing. He
always sees a huge leap in Finn's development when we are there and comments on it throughout the whole appointment. He
says the minute you see Finn stop progressing...that's when you have a
problem, but always push him to progress.
So, in closing, don't take these tests too seriously. Look at them to see what you need to work on, but don't let them define your child or how you interact with your child. Don't let the test results break you. Keep praising each accomplishment, no matter how small it may be to other people. Cheer loud and often!
Wednesday, May 23, 2012
Wednesday, May 9, 2012
Isn't it Always the Little Things?
Some times those little things aren't so little...sometimes they are enormous. Yesterday, out of no where, Finn said "Where daddy go?" He then said, "I want daddy." He was clear as day and I sat there shocked with tears streaming down my face.
I tried to get him to repeat, but he had moved on to wanting his "hoo-hoos" aka shoes. It was tough to go to sleep last night. I was beaming brighter than the sun!
This morning, on the way to get his hearing aid molds done, he said "I want more." It sounded more like "I unt morey" but I knew what he meant - he had just finished some potato sticks (yes potato sticks at 8:00am). Yay!!!
When you child is given a such a rare diagnosis, you have to take everything doctors tell you with a grain of salt and understand that you can still push your child to be everything he or she can be. Children with Finn's syndromes have such varying issues - both medical and developmental. Just like with any "typical" child, you cannot compare one child with a syndrome to another with the same syndrome.
We have gotten excited over so many "little things" in the past from Finn pointing his index finger, to chewing food, to throwing a tantrum, to drawing a straight line on a piece of paper, and I just know we will be having many more celebrations.
Don't let words get in the way of you providing all that you can provide for your child. Don't listen when someone wants to tell you what your child's potential is.
Our house is a wreck. I'm exhausted and live off of caffeine and vitamins. I quit a great paying career. I go to bed with my voice hoarse at night from talking so much trying to get Finn to repeat after me. We have medical bills the size of mortgage payments (sometimes multiple mortgage payments) every month. And all of it is worth it to watch your children progress and learn something new every day. The other stuff doesn't matter at all, spending time with my beautiful family and sharing these amazing experiences is what life is all about.
I tried to get him to repeat, but he had moved on to wanting his "hoo-hoos" aka shoes. It was tough to go to sleep last night. I was beaming brighter than the sun!
This morning, on the way to get his hearing aid molds done, he said "I want more." It sounded more like "I unt morey" but I knew what he meant - he had just finished some potato sticks (yes potato sticks at 8:00am). Yay!!!
When you child is given a such a rare diagnosis, you have to take everything doctors tell you with a grain of salt and understand that you can still push your child to be everything he or she can be. Children with Finn's syndromes have such varying issues - both medical and developmental. Just like with any "typical" child, you cannot compare one child with a syndrome to another with the same syndrome.
We have gotten excited over so many "little things" in the past from Finn pointing his index finger, to chewing food, to throwing a tantrum, to drawing a straight line on a piece of paper, and I just know we will be having many more celebrations.
Don't let words get in the way of you providing all that you can provide for your child. Don't listen when someone wants to tell you what your child's potential is.
Our house is a wreck. I'm exhausted and live off of caffeine and vitamins. I quit a great paying career. I go to bed with my voice hoarse at night from talking so much trying to get Finn to repeat after me. We have medical bills the size of mortgage payments (sometimes multiple mortgage payments) every month. And all of it is worth it to watch your children progress and learn something new every day. The other stuff doesn't matter at all, spending time with my beautiful family and sharing these amazing experiences is what life is all about.
Wednesday, May 2, 2012
Kids Toolbox
I cannot wait to get to Clearwater and check out this store. Kids Toolbox is designed for special needs kids and their parents/teachers and from what I can tell, the prices are very reasonable.
In addition, they hold $10 classes for special needs children on Sundays. Coming up is art, followed by music, and then karate. The ages for these classes is 5 to 11, but the lady I spoke to on the phone said younger children can participate as long as their parents stay with them. They just had yoga which I would have loved to take Finn too.
They also have free parent seminars one a month. The next topic is ASD and the topic following that is on how to stay calm.
For more information, check out their website:
http://www.kidstoolbox.com/
In addition, they hold $10 classes for special needs children on Sundays. Coming up is art, followed by music, and then karate. The ages for these classes is 5 to 11, but the lady I spoke to on the phone said younger children can participate as long as their parents stay with them. They just had yoga which I would have loved to take Finn too.
They also have free parent seminars one a month. The next topic is ASD and the topic following that is on how to stay calm.
For more information, check out their website:
http://www.kidstoolbox.com/
Monday, April 30, 2012
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.
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.
Friday, April 27, 2012
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 :)
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 :)
Wednesday, April 25, 2012
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/
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/
Sunday, April 22, 2012
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
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/
Friday, April 13, 2012
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.
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.
Thursday, April 12, 2012
"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.
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.
Tuesday, April 10, 2012
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 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!
Monday, April 9, 2012
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 :)
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 :)
Sunday, April 8, 2012
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!
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!
Wednesday, April 4, 2012
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.
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.
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!
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
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:
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:
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| Finn and Camila driving at Busch Gardens |
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| Finn loves his "Na Na." She doesn't seem to mind him holding her hand when she is passed out after a long day! |
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| Finn in the center of it all during the soccer game. |
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| 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.
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.
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
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.
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.
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