CTC Clinic

In true fashion I'm still playing catch-up. Awhile ago (about 1 1/2 months) James went to his first CTC clinic (Coordinated Treatment Center). It was very similar to the Special Needs Clinic we attended in WI but a little different. Because James sees the outpatient therapists at Sanford on a weekly basis our day was shortened because we didn't need to visit with the OT, PT or speech therapist. Another difference was that we saw a pediatrician in addition to the physiatrist and nutritionist. What did we learn.....not too much new but a few modifiactions were made. His baclofen dose was increased due to the fact that he's lost some range of motion recently. So far this difference seems to have helped. It mostly seems to depend on the time of day and who's working with James as to how tight his muscles really are.

The big ticket item for CTC clinic was our visit with the nutritionist. It seems that this is a never ending cycle for James. He's lost about 2 lbs since we've moved to ND. We don't think his calorie intake has decreased but that he's burning more calories because he's going to school 4 days a week plus his time in his stander at home and his outpatient therapy. The nutritionist thinks that we're maximizing all of his caloric intake options. So we're down to a goal/ultimatum type decision. We have 6 months (from early November) to get James to gain a minimum of 1.5-3 pounds. We're doing all we can....please pray that James can increase/maintain his weight! If we don't reach our goal we will more than likely have to make the painful decision for James to get a feeding tube :(.

All in all it was a pretty good visit.

Trip to Williston

We took a quick trip to Williston to visit my brother and his wife and all James and Elliot's cousins. Elliot, Austin and Avery all celebrated birthdays. James had a great time seeing all the kids and snuggling with his aunties and Grandma K.

He especially loved laying on the floor next to his baby cousin Lucas! His eyes just lit up and he broke out in his big gorgeous smile!

Catch-Up-Halloween

It's time for me to play catch-up. We've had a busy couple of months at our house. I'll start with Halloween!! The week before Halloween we were able to take James to a Halloween party for kids with physical disabilities! How awesome was this party?! James and his little brother Elliot dressed up and were able to go and play games and eat and see all the mascots from businesses around town. Each registered child got a gift certificate of some sort-James got $20 to Toys R Us and we purchased him Open Season 2 and a Mickey Mouse movie. (If you didn't know, Open Season is James' favorite movie. He laughs at it non stop and will watch it all day if you let him! I think we've decided that any movie with talking animals in it is funny to James). James dressed up as Captain America and even won some bubbles-that just made his day!

Medicaid Frustrations

I had a tough week this week. I learned this week, that all time James has really not been on Medicaid. I started getting bills from Sanford for James' outpatient therapy and his prescristions were all requiring copays. Come to find out, his Medicaid never started because they never got his screening saying that he was disabled etc (as if there's any question). After an additional 5 phone calls I learned that we had done the legwork, just hadn't enrolled James in waivered services. I wish someone would have told me!!! All this time we've been acruing bills and here we thought they'd all be covered by Medicaid. Sometimes I decide that this whole system is not so bad to navigate and then a week later I find out I'm completely wrong! So now I've gotten more paperwork to fill out and hopefully no more problems after that.

I did learn however that MA will probably cover and iPad for James! He's been using one at school and has been quite successful. 5/8 times he will correctly identify and object when they show him 3 pictures!! How amazing! We were all so excited, his teachers, therapists and he even got to show off for the director of special services! We love that he's progressing and loving school. He even has school pictures coming up!

I Am the Child

I first read this poem at St Joseph's Children's Hospital in Marshfield, WI while James was an inpatient there. I love this poem and feel that so many parts are what my gorgeous little boy would say.


I AM THE CHILD
(Author Unknown)
I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of -- I see that as well. I am aware of much, whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do.
You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well-being, sharing my needs, or comments about the world about me.
I do not give you rewards as defined by the world's standards -- great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable -- I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.
I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependent on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.
I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strife's and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.
I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

How Mother's of Handicapped Children are Chosen

I've read this several times, but thought I'd share it here.


How Mothers of Handicapped Children are Chosen

Erma Bombeck, 1980
This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth. As he observes, he instructs his angels to make notes.“Armstrong, Beth; son; patron saint, Matthew. Forrest, Marjorie; daughter; patron saint, Cecilia.
Finally he passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one, God? She’s so happy.”
“Exactly,” smiles God. “Could I give a handicapped child a mother who does not know laughter?”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it. I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make it live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.”
God smiles, “No matter. I can fix that. This one is perfect.She has just enough selfishness.”
The angel gasps, “Selfishness?
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, there is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a ’spoken word. She will never consider a ’step’ ordinary. When her child says ‘Mama’ for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life.”
“And what about her patron saint?” asks the angel.God smiles. “A mirror will suffice.”

It's That Time of Year

Fall is one of my favorite times of year. I love the colors most I think. I love the oranges and browns and reds. For some reason it calms me. And thank goodness for that, because the season of fall brings with it the worry of kids getting sick, especially flu season.

In my household, we all get a flu shot (well my husband doesn't always...men...). I'm a big believer in vaccines, especially for our little James. He's already been battling allergies/cold for the past month. I've had to keep him hom from school a few days and we've been going through Allbuterol nebulizers like they're water! I luckily always get a flu vaccine at work and will be soon taking the boys into the pediatrician for theirs and hopefully will talk my husband into it too.

Here are some facts that I got from the CDC at http://www.cdc.gov/flu/protect/keyfacts.htm

There are two types of vaccines:

The “flu shot” — an inactivated vaccine (containing killed virus) that is given with a needle, usually in the arm. The flu shot is approved for use in people older than 6 months, including healthy people and people with chronic medical conditions.There are three different flu shots available:
a regular flu shot approved for people ages 6 months and older
a high-dose flu shot approved for people 65 and older, and
an intradermal flu shot approved for people 18 to 64 years of age.

The nasal-spray flu vaccine — a vaccine made with live, weakened flu viruses that is given as a nasal spray (sometimes called LAIV for “Live Attenuated Influenza Vaccine”). The viruses in the nasal spray vaccine do not cause the flu. LAIV is approved for use in healthy* people 2 through 49 years of age who are not pregnant.

Seasonal flu vaccines protect against the three influenza viruses that research indicates will be most common during the upcoming season. The viruses in the vaccine can change each year based on international surveillance and scientists’ estimations about which types and strains of viruses will circulate in a given year. About 2 weeks after vaccination, antibodies that provide protection against the influenza viruses in the vaccine develop in the body. Information specific to the 2011-2012 season, including the vaccine formulation, can be found at 2011-2012 Flu Season.

When to Get Vaccinated

CDC recommends that people get their seasonal flu vaccine as soon as vaccine becomes available in their community. Vaccination before December is best since this timing ensures that protective antibodies are in place before flu activity is typically at its highest. CDC continues to encourage people to get vaccinated throughout the flu season, which can begin as early as October and last as late as May. Over the course of the flu season, many different influenza viruses can circulate at different times and in different places. As long as flu viruses are still spreading in the community, vaccination can provide protective benefit

How effective is the flu vaccine?

Inactivated influenza vaccine effectiveness (VE) can vary from year to year and among different age and risk groups. In general, the highest VE is among young healthy adults and older children. Lower VE is reported for young children (e.g., those younger than 2 years of age), and older adults with only one randomized trial conducted in adults 60 years and older. VE also depends on the degree to which influenza vaccine viruses are well matched to circulating influenza viruses. Lower VE is expected in years when the match between circulating and vaccine viruses are suboptimal. VE also varies based on the outcome used, with generally the lowest VE estimates using non-influenza specific non-laboratory confirmed outcomes. The use of antibody seroconversion as a sole measure of VE may result in an overestimation of VE compared to other laboratory outcomes including viral culture and RT-PCR. CDC is currently reviewing recently published studies on VE to update existing estimates.
In healthy adults younger than 65 years of age, the flu vaccine can also prevent lost work days, and keep you from having to see the doctor or using unnecessary antibiotics.

How effective is the flu vaccine in children?

Because children younger than 5 years of age are at increased risk of severe flu illnesses, children 6-59 months and the household contacts and caregivers of children 0-59 months are recommended to get the flu vaccine every year. Children younger than 6 months of age are most at risk for having complications from the flu. However, they are too young to get the flu vaccine. To protect these infants, it is very important that their household members and out-of-home caregivers be vaccinated against the flu.
The flu vaccine can prevent 66% or more influenza infections in young children, with even higher estimates for older children, when the vaccine strains are well-matched to the flu viruses causing illness. Vaccinating close contacts of children can also help decrease children’s risk of getting the flu.
All children 6 months through 8 years of age are recommended to receive 2 doses of 2010-11 flu vaccine 4 or more weeks apart unless they have received:
at least 1 dose of 2009 H1N1 vaccine last flu season, and
at least 1 dose of seasonal vaccine prior to the 2009-2010 flu season or 2 doses of 2009-10 seasonal flu vaccine last flu season If a child has fulfilled both requirements, they only need 1 dose of the 2010-11 flu vaccine.
Studies have shown that two doses are needed in children younger than 9 the first year they are vaccinated in order to maximize the protective benefit from vaccination. Once you get vaccinated, your body makes protective antibodies in about two weeks. However, children younger than 9 years old who are being vaccinated for the first time need a second dose 4 or more weeks later in order to be protected.

Stationery card

Little Goblins Halloween Card

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Reading

If you've followed James' caringbridge site you'll know that he loves to read books. When we read to James we can't just read one book, we usually have to read about 10 books-no exaggeration! We were recently told about a program that is supported by Cass and Clay Counties United Way called Imagination Library. It was started by Dolly Parton and what they do is send your child an age appropriate book to your child for free every month until they turn 5! How amazing is that! All you have to do is google Dolly Parton's Imagination Library and sign up! If you're not sure your county supports this program-no problem. Simply go to the website and and choose your zip code and they'll tell you if your county participates!

Another recent development that is great for James and his reading is that he now has library class every week at school! He will bring home one book each week! They help him to pick an appropriate book that he can learn from and enjoy!

Reading is one the best things we can do for our children. We've never had a problem with reading to James but we've found with Elliot (our almost 2 year old) is that he just doesn't sit still long enough to read him a book! However as he's gotten older we've noticed that he'll just take some time himself to sit down and at least look at books. Some days it's for 5 seconds and some days he'll sit and look at every book we own! One thing I've tried to do for our boys is to set aside a specific time (right before naptime for us) and we read for 20 minutes. I sit with James in the rocking chair and read to him (about 4-5 books) and turn off the tv and any other distractions. Usually Elliot will follow suit and pull out several books and look at them and every once in a while venture over to James and I to check out the book we're reading. If you have any other ideas for getting more reading time in with your kids, please share!

Happy Reading!

It's that time of year

The cold season is going full force at our house. James got his first cold this week and it started off pretty bad. After school on Friday he was breathing pretty hard and was much worse after his nap. Luckily we've been able to get it under control with frequent nebulizers and nose-sucking and snuggling. I'm nervous for this winter for James. He's been quite well since last January when he had his fundoplication surgery to help with his reflux. However, at the same time we switched the boys to a small in home daycare and since we moved to Fargo we've had a nanny coming into our home. Now with James being in school I'm sure he'll be exposed to more illnesses and such. Hopefully we'll be able to avoid any major instances of respiratory distress. We'll definately be be staying on top of things with hime by giving him frequent nebulizer treatments, along with 2 other asthma medications but in addition we'll be sure to be washing our hands often, avoiding people who are smoking, and possibly trying to keep the kids out of stores with lots of people.

First Day of School!

James went off to his first day of pre-school with no tears! He was soo excited! I worried because when he went to summer school he cried almost every day. I think that it helped that the week before school started we were able to go to Back to School night. It was great to meet his teachers and therapists and share with them what we do at home and at outpatient therapy as well as our goals and things that comfort him. James rides the bus to and from school 4 days a week. And on his day off from school he goes to outpatient therapy. Makes for one busy little boy. As I explained to James that morning that he was going to school and would see his friends and teacher and get to play, he had a big bright smile on his face. He got excited every time he saw a bus drive by our street. About 2 or 3 went past before his came. I must say I was very proud of my little boy. From what I hear, James does well at school and loves to be there. He's good on the bus too and never makes a peep. Just likes to go for his ride and look outside at everything. We've been seeing some progressing in James in the past few weeks. He's holding his head much better when on his tummy and tries to roll over more. He's in love with little things he can get his hands on right now, including matchbox cars, stickers, and little action figures. He gets quite upset when he loses them. I'm super excited because I came across a company recently that makes adaptive toys and such for kids like James. I ordered a catalog and can't wait to get him some of the stuff! I say some, because a lot of it is very expensive and large. While we'd love to get James an adaptive swing, it's not very practical while we live in an apartment. James of course got Labor Day off from school, but will be right back at it Tuesday morning!

Caregivers

Having a child with cerebral palsy has also posed a big question for us as to how to find child care for our kids. We really lucked out with our first daycare and we miss them terribly. We enrolled James in a regular daycare when he was about 10 months old. At that time we didn't know he had cerebral palsy, but we did know he had developmental delays. The daycare worked with us and we decided to put James in his age appropriate room. We had the most amazing teachers in that room. One of them is in this picture with James and he just loved her! She continued to care for James at his second daycare when our first daycare closed. She really understood his needs and took a special interest in him. It did help that her mom had worked with special needs, and that was something she always had an interest in. Our third daycare was a home daycare which worked well too. Now that we're in Fargo, I just can't find an affordable hourly daycare that has openings for us. We're on several waiting lists but until that time we've had a nanny. She's been great. We love that we don't have to pack the kids up and take them somewhere and they get to be in their own environment.

With all of our child care situations we always have to explain James and his abilities. I often find myself telling people that James really is easy to care for despite his condition. He's a lot like taking care of an infant-but easier. However, this is in my eyes. I know he makes some people uncomfortable but usually with time, they find he's quite easy to care for once you get to know him. To me that seems a lot like any other kid. It takes awhile to understand what makes them tick, and once you figure that out, life is much easier.

As we approach the fall and the new school year, our nanny will be going to college. She'll only be available some of the days we need her and so we are faced with finding a new child care situation again. I found a child care center that takes part time kids and specifically they take kids with special needs, but their rates and about double what we pay right now for our nanny. We love the idea of a child care center with a curriculum for both of our kids, but we have to make sure it fits in our budget. I hope that one day we won't have this worry.

Small but Amazing

James has been a pretty small kid for quite some time now. Doctors started becoming concerned over his height, and weight about 1 1/2 years ago. We are constantly struggling to get him to take in as many calories as we can. He gets his primary nutrition from a bottle. He drinks mostly Pediasure and Pediasure 1/5 (same as Pediasure, it just has more calories). We do try to get him to drink some juice and water too. We usually put his Miralax in there to help keep him regular-he often becomes constipated to a point where it can become painful for him.
In the past we have had doctors approach us about getting James a G-tube. A g-tube is a feeding tube that would go directly into James' stomach through an opening in his abdomen. Of course this not something we've ever wanted for James. First of all, James loves to eat and we're worried that he would develop an even stronger oral aversion if he had a G-tube. An oral aversion is where people don't want certain textures in their mouth, or sometimes they don't want anything in their mouths at all. From what we understand we are extremely lucky that James didn't develop an oral aversion when he had his trach. Apparently that is very common.
Lately James' weight has been concerning even me. In the past it's never really bothered me very much. Andy and I are not large people and weren't big kids either. My siblings aren't big and tall and neither are my parents. My mom tells me that we were all small as younger toddlers. However, to me lately it seems that James is not eating as much as he used to. We've always been encouraged to get more calories in him as well as more fluids. It's a pretty hard task. If James doesn't want it, how can we force him to drink it?!
I was able to speak with a nutritionist today that we'll be working with from now on here in Fargo. He assured me that although James is very low on the growth charts, that he has a very appropriate BMI and his height vs weight it very proportional. She did say that even though some kids have a normal BMI that they can still be "too skinny" or "too large". She'll come visit us on Monday while James is in OT/PT and take a look at him. She'll also do a caliper test and see how much he has for fat stores. I think that'll be interesting to know.


On another note, I hope to get some pictures up here this weekend so you can all see how beautiful James is! This weekend we're going to my hometown to spend some time with family. My cousin is having a birthday, so we'll be celebrating. I'm sure our kids will have fun. We'll be out in the country with lots of room to run and play and James will have lots of kids to watch and laugh at, not to mention his Grandma to snuggle with.

Last Day of Summer School

Thursday is James' last day of summer school at the Eagles Education Center in South Fargo. We finally reached a milestone last week, when James got on the school bus without crying for the first time. Unfortunately, he'll get a month off and I'm afraid we'll start all over with the bus anxiety. I have been assured by the bus driver and aide that as soon as they drive off James is as happy has a clam. Somehow, that does not surprise me. James has always done that. It reminds me of when he was in the hospital while we were living in Marshfield. The nurses would tell me how happy he is and how much fun he would have-but the second he saw me he would start crying. It was the most edearing thing.

James has been bringing home lots of pictures that he colors by himself!! I am so proud of him. He loves to color-one of his favorite activities when he's in his stander. He has also had fun playing the parachute at school and just seeing the other kids!

He'll get the month of August off from school but he'll still have his once a week therapies at Sanford. I think James will enjoy his time off from school, but I'm sure he'll be ready to go back to all his friends and teachers at the end of August. I'm very anxious to see his teachers and therapists at back to school night once school starts. It'll be nice to have so many people working with James to get him to reach his full potential!

A Need to Share

I feel I have this need to share our experience with other families who may be in the same situation as us.
My son James was born premature at 25 weeks. He weighed 1 lb 13 oz and was 14 1/2 inches long. James experience a pretty typical course in the NICU. He was intubated, had penumonia several times, required blood transfusions and started feedings by a NG tube inserted through his nose into his stomach. As time went on James got bigger and stronger. Finally about 7-8 weeks after he was born he accidentally extubated himself and happened to be ok! They left the breathing tube out and he did fantastic. As time went on the doctors noticed that James was always "squeaking" while he was breathing. After investigation they found that he had a narrowed airway because he had been intubated for so long. James was required to have a tracheostomy and finally came home 143 days after he was born.
As time went on we noticed that James was not meeting milestones. We knew he'd be behind because he was so premature so we didn't waorry too much, but we did enlist the help of our local Birth to 3 program and got him started with Occupational Therapy. Finally at 10 months old James was able to have a reconstruction surgery for his airway and he was able to get rid of his trach. We were so sure that things were looking up and James would surely start to progress in his milestones.
As time continued on James did not meet milestones. On April 11, 2009 we were given the devastating news that James had cerebral palsy. Our lives were forever changed. We were immediately scheduled appointments with specialists and therapists.
James is now 3 years old and we continue to struggle with the everday things that he cannot do. He is very much like taking care of an infant. He cannot sit, stand, eat normal food, talk or do much of what a normal 3 year old does. Regardless James is the light of our lives and we can't imagine our life without him. He is a very happy and content little boy. He loves Mickey Mouse and snuggling with his mom and dad. He loves to watch his little brother play and laughs at him all the time.
This blog is the story of our everyday lives living with a child with cerebral palsy-as a family.