Holidays

Christmas Day 2011

We had a good Christmas this year.  We were able to spend Christmas Eve with my family, which was great because everyone was there including all 4 grand kids.  My brother Parker called from his mission in New Zealand and it was nice to talk with him for a bit. 

Christmas Day we had brunch at my parents which is a tradition my grandmother started, with delicious food.  This was after we opened our own presents at home.  Later that day, we went to visit Chris's family.  We were blessed with a lot of great gifts; Carter got a lot of cute clothes and some toys and books.

The hardest part of the holiday weekend was that Carter is still having his almost daily freak outs.  He will cry for 30-40 min pretty hard sometimes combined with screaming, and we still don't know why, and then he is pretty touchy the rest of the evening.  It makes it hard to go out in the afternoon because we are wary of upsetting him, and any touching when he's in this mood just sets him off all over again.  Unfortunately he had an episode each evening, so it was kind of hard to feel the Christmas spirit and joy for a little bit.  With patience and time, Carter did enjoy parts of the activities and he seemed to enjoy the lights at Temple Square.  We went on Monday since we were so busy up until then. 
Here's to hoping for a good year, full of health and hopefully some developments on Carter's part.  I'm hoping for less appointments and hospital stays, and we are excited to welcome Sierra into our home at the end of April.  MERRY CHRISTMAS everyone!  And a Happy New Year!!

Feeling like a Shut-In

I have read a post that covered this topic on a friend's blog- the family also has a disabled child and has struggled with feeling like a shut-in.  I didn't think too much on the topic until I started feeling that way myself.  Carter can be extremely difficult to take places sometimes, depending on the time of day or even just his mood.  He seems to be more sensitive and difficult lately, and it's hard to predict when things will go well.  We've frequently left church I don't even know how many times, because Carter freaks out and cries and won't calm down.  The only solution seems to be to leave, and he is calm once in the car or home.  Last Sunday we tried leaving him in his stroller, and we actually made it through all 3 hours of church.  I think it was successful because he liked being able to look around and not be held or touched.  I hope this solution can help us as we move forward, and eventually I hope a wheelchair will be even better.

After almost giving up on even trying to go to church, we started having problems with other things.  We've had to leave family dinners early because Carter gets upset at something and won't calm down.  Again, just putting him in the car and driving makes him super happy.  I can't just drive around all day all the time, so obviously not a solution.  Then it's happened where he is sick or in the hospital, and we have missed family events and/or parties.  We have also missed a birthday party because Carter just could not calm down.  I tend to lose my cool pretty quickly in situations like this; maybe because I'm pregnant and not feeling well anyway, but also because I don't feel like Carter is growing up or that he is behaving more like a toddler or child.  I feel more than ever he is a baby, because all he can do is cry to communicate his distress.  I wish I could reason with him by talking or even signing, but we are still reduced to panicking in a public setting while trying to solve our child's issues while he continues to scream and cry ever louder.  I've mentioned this before in other posts, but touching or holding him just aggravates the situation.  A car ride, or sometimes even medicine is the only real solution. 

I've become more and more frustrated as the events have piled up that we have been missing out on.  Not that they were all super great or exciting anyway, but it really sucks to feel left out.  I feel as far away from normal as possible some days.  I struggle with feeling "normal" or accepted even when Carter is behaving well.  Now that his unpredictable behaviors have us running for the car often, I don't even feel like trying anymore.  I know that if he is napping, absolutely nothing is worth waking him up for.  I know certain times of the day to avoid, but it isn't always predictable.  Because of my hubby's work schedule, I am often alone with Carter when I wish I could get out and go places and do things, but I know it's not even worth trying.  Being pregnant makes it really difficult to carry him around, get him in and out of the car, etc.  So these activities will eventually have to become limited on their own.  I'm sure it's a combination of the dreary weather, the dark, my pregnancy, and Carter-- but I sure feel like a loner or hermit a lot of the time.  I often find myself feeling very unfortunate in my lot in life, and trials.  I find it hard to find the motivation to keep going each day. 

Carter Turns 2!

My sweet little boy turned 2 this last week.  I can't believe how big he is, although in ways he still seems like my little baby.  He has been such a sweetheart, I wonder sometimes if it's from the ketogenic diet.  He isn't crying at night anymore (knock on wood) and what seizures he has are few and small.  He seems happier and more content, and lets me cuddle him more again.  He really has been such a delight to be around lately I can't get enough of him.  We had a little party for him on Saturday with the family and a few friends, here are some pictures:

Carter with his Grandpa Devey, who is posing like him.

Us with our sweet birthday boy

Crying during presents, he was pretty tired.  And here he is asleep in the middle of his party.  LOL.  Well, he is the birthday boy so it's his party!
Stats:  26 lbs 12 oz and 24.5 inches long.  He is 50% in height and 20% in weight.  He has come down a little bit but he is proportionate, and a little easier to carry.

Sleep Study & Inspirational Stories

We finally have more results from Carter's sleep study from a month ago.  I followed up with ENT today and they told me a few things.  They rate the studies on a scale; 5 is usually severe for a child, 20 for an adult.  Carter is a 23- I think this means for every hour he averages 23 episodes of sleep apnea or some form of obstructive breathing.  That is why the sleep specialist suggested putting him on oxygen whenever he is asleep.  There was also a point in the study when his oxygen dropped to 47- what?!  They usually want the oxygen stats at 90-100, 47 is very very low.  We have not been successful with keeping his oxygen on him, the strong little monkey.  So the doctor said our option is to remove his tonsils and adenoids.  Another surgery I say??  First of all, I am upset that it took over a month to get any kind of results.  AND the results were told to us by two different people, not the sleep specialists.  So now the sleep doctor is out of the country for another two weeks, in which time we will decide if the surgery is worth it.  I am doing research and checking with other 1p36 families to see if it helped their child.  Carter's tonsils are not overly large, so I'm worried it won't help much.  Just one more thing to have to deal with, this poor guy.

I've run across some beautiful stories/poems on the 1p36 group on Facebook.  They are not mine, but I wanted to share them:

 Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes... in a giant ledger.
"Armstrong, Beth; son; patron saint, Matthew.
"Forrest, Marjorie; daughter; patron saint, Cecelia.
"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity.
" 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? That would be cruel."
"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. She'll have to teach the child to 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? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then 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
"Momma" 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 because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, his pen poised in midair.
God smiles. "A mirror will suffice."

I Am The Child
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 dependant 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 strifes 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.

Ketogenic Diet & Hospital Stay

Carter was in the hospital this week to start the Ketogenic diet.  For those not familiar with this, I have blogged about it several times before.  It is a diet low in carbs, little if no sugar, normal protein and high fat (similar to Atkins).  The diet is used to control seizures in children and kids when medication is not enough.  The diet requires your child stay in the hospital 2-5 days to be monitored and make sure their body is making the switch well.  Unfortunately before arriving there, Carter had started to develop a cold that I think he got from me.  Our stay ended up being the 5 days because his cold started to interfere with his well being and the nurses had to suction him every few hours day and night.  When Carter gets sick, it gets pretty serious fast.  All that thick mucus is hard for him to handle and with his low muscle tone he can't cough it up well enough, or blow his nose to get it out like adults can.  The poor guy had to endure not only a new diet, vitals every 4 hours, ketone levels checked every 4 hours (details later), had to be poked in a finger every 4 hours for his blood sugar level, but he also had to be suctioned out quite often.  This makes him very angry.

By the third day his blood sugar levels were close to borderline low, so the dietitian and nurse practitioner lowered the ratio of his formula.  With the diet, for every three or four calories of fat, there is one gram of protein/carbohydrate.  So the ratio is 3:1- they had to change it down a little to 2.75:1 which means there is a little more carb in the diet.  He seemed to tolerate that better and his blood sugar levels came back up.  We are still feeding him four times a day and spreading out the formula and water so he gets an equal amount each time.  We are no longer doing a continuous night feed which has its perks in ways.  The reason they test the blood sugar level so often in the hospital is because they want the child to be stable before sending them home, because I won't be testing him for that.  I just have to look for any warning signs of hypoglycemia and report it if it happens.

So the ketone strips are what I am doing at home 2-4 times a day the first month.  Basically I put a couple cotton balls in his diaper and wait until he soaks them up with urine, and then place them in a syringe and use the plunger to squeeze it out.  Then I dip a ketone strip in the urine and wait for the colors to show up.  It is kind of similar to the test strip the doctors have pregnant women do at their appointments.  We want the strip to be purple which shows there are ketones present.  So the ketogenic diet makes the child use fat instead of carbs for energy.  Since there is a lot of fat in the diet, the body uses that for energy, and the fat changes into ketones, which then feed the body's cells.  The high amount of ketones in the body can help stop seizures in children. 

So basically the main differences this diet represents to us as parents is the following:
-we prepare his formula ourselves once a day.  We have a specific formula from the dietitian and we mix the proper amount of water with the Ketocal formula, and the Benoprotein formula.  Everything is exact and measured out on a scale or a cylinder.  Once prepared, the formula is good for 24 hours.  It can sit out for 4 hours maximum in room temperature.
-we text his urine for ketones 2-4 times a day
-he now takes vitamins and supplements once a day (5 of them besides his normal prescriptions)
-we weigh him once a week and report to the dietitian his weekly weight, ketones and seizures activity
-lastly, he now is on oxygen at night

The reason he is on oxygen now is because we finally got someone to look up Carter's sleep study results.  After calling several times and getting no response I was pretty frustrated.  They said he has irregular breathing patterns, not quite sleep apnea, and requires .25 of a liter of oxygen while asleep.  I have to admit this was the most challenging change for me, because he constantly rips out his nose canola and he hates it.  We try to sneak it on him when he's asleep, but he usually knows and wakes up.  We follow up with ENT next week to find out more about his obstructive breathing patterns.

Also some interesting details with the diet:  he can't have any liquid medicines unless approve by the dietitian, because they usually contain sugar.  If he needs a pain medicine like Tylenol, we are to use an adult tablet and then ask what the child strength would be.  Also, any products such as baby wipes, shampoo, wash, chapstick, etc have to be approved and looked over for carbs or sugar.  Surprisingly, many things have sugar in them and can affect the effectiveness of the diet.  We have an approve list of medications as well as body products that we follow.  We had to switch him to Johnson & Johnson shampoo and wash- I was using the WalMart brand and it had sugar in it.  So now we have to watch everything he eats, but everything that touches him as well.

Overall, the diet has not been a huge change for us because he has a G Tube and is fed through his stomach.  He also seems to be tolerating it well which is great.  We have seen very few seizures in the last few days, so we are hoping this bodes well for Carter and us.  I do admit with every little change with Carter, I feel a little more isolated from being "normal" and going out and doing normal activities.  It also makes having a babysitter harder because we are constantly training our parents.   I'm sure as with everything else, with time, it will just be another norm for us.

One last side note- it seems the older Carter gets the weaker his immune system seems to be.  Perhaps it is just with winter time; he was just very sick mid October and then got sick again end of November.  It worries me because he usually requires oxygen and extensive suctioning.  I'm trying to figure out what places or activities we should restrict during these cold months to keep him from getting sick.  Also, I'm watching closely for any family members or friends that are sick to not be around him.  It might sound excessive, but when a simple cold lands him in the hospital it just isn't worth the risk.