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Wednesday, December 28, 2011

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!!

Saturday, December 17, 2011

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. 

Monday, December 12, 2011

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.

Wednesday, December 7, 2011

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.

Sunday, December 4, 2011

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.

Monday, November 28, 2011

Crying

Crying....I cringe when I hear it even when it's not my baby.  You would think my tolerance would be higher, but no it's not.  As soon as I hear crying I just want it to stop. 

Carter has been different lately, I don't know if it's a stage.  He cries more often during the day and at night.  Sometimes it is because of seizures and then he can usually calm himself down within a few minutes.  Other times, he will cry and then almost scream for up to an hour.  The difficult thing is not being able to communicate with my almost 2 year old and ask what's wrong.  I am still doing the guessing game, and trying to figure out the quickest and best way to help him.  The other frustrating part is that holding him or touching him usually makes him even more mad.  So our options are limited and we usually end up putting him in his swing or something and letting him cry it out.  Sometimes medicine works so I wonder if he is getting more teeth.  Our nights lately consist of him waking up at least twice crying- it's nice when he can calm himself down and fall back asleep but some nights that doesn't happen.  Being pregnant and already tired and not feeling well, my patience is already pretty thin.

His crying habits have already made us have to leave a few places or events, hoping that a car ride will calm him down.  My question now is- does he freak out in closer spaces that are loud or have lots of people?  He doesn't do well with church, but he loves going to the mall or stores.  I dunno?  I hope this stops soon, whatever this 'phase' is.  Since Carter's only way of communicating is by crying, that really is his only option to let us know something is wrong.  I wish he could at least sign to me but that's a long way down the road.  Anyone else have phases like this with their 1p36 child?  I hope that starting the ketogenic diet this week will provide some relief, even if that means less crying or less seizures.  I will be grateful for anything.

Thursday, November 17, 2011

Ketogenic Diet/ Mickey Button

This is a picture that the geneticist gave us to show Chromosome 1 and the deletion that Carter has.  As you can see they are labeled, and his deletion is from approximately 1p36.33 to 1p36.32.  She never said if that was a larger or smaller deletion than most.  Just an interesting fact.

We have decided to go ahead with the Ketogenic diet and will be admitted to Primary's near the end of the month for 2-5 days.  The ketogenic diet is high in fat, normal in protein, and low in carbohydrates.  All three of these have to be in the diet to control the seizures.  For every 3 or 4 calories of fat, there is one gram of protein-carbohydrate.  Since Carter is on a G Tube, he will receive the Ketocal formula which is specialized just for this diet.  The G Tube should make this a much simpler process since we aren't controlling what he eats or doesn't eat by mouth.  We have to dedicate at least two months to see if this helps; the dietitian said it helps some kids for years and then peters out.  We are hopeful that this will help control his seizures if not diminish them entirely.  Hopeful right?

The four options with seizures are as such:  medication; but once they have tried 2 or 3 the odds of any medicine helping is less than 5%.  The second option is to remove parts of the brain- which is not possible for Carter because his seizures come from all over the brain.  The third option is to have a device inserted called the VNS Therapy.  It is a treatment where an implanted device generates electrical current that is transmitted to the brain via a nerve in the neck. This treatment has been shown to reduce seizures in approximately two thirds of those who have the device inserted.  The fourth and last option is the ketogenic diet. 

Sleep Study  the nurse called me and said the EEG they ran all night long did not show anything significant.  It really did not tell them much.  Bummer.  I'm still waiting to hear what the actual sleep study showed.
Mickey Button  Carter is finally past the 12 weeks of "recovery" since his G Tube placement.  The doctor will be switching out his long tube for the Mickey button with balloon.  We are excited as it's much more low profile, he can have normal baths again and also swim.

Monday, November 14, 2011

Announcing Baby's Gender

We are having a baby girl!  Announcing our precious Baby Sierra due to arrive April 29th, 2012.

Thursday, November 10, 2011

Vision Specialist, Therapy, Pediatrician, Equipment

Carter's life seems to go in and out of busy spurts of appointments and it is back.  Since his G Tube we have taken things slow and relaxed some- because of the long tube he hasn't been able to do tummy time, his stander or aggressive therapy.  He will be getting the button in the next week so things have been picking up again.  He saw a vision specialist from the school of the deaf and blind, to evaluate him and his vision.  He has checked out twice with a vision doctor at Primary's, but we were told he was still visually inattentive so we wanted to see what more we could find out.  She asked me a bunch of questions and worked with Carter for a little bit; we will start seeing her monthly to work on things.  This now brings Carter's appointments to being quite busy:

Monthly Appointments
Physical Therapist at home- twice a month
Physical Therapist at Rehab center- twice a month (Taylorsville)
Feeding Specialist- once a month (Taylorsville)
Vision Specialist at home- three times a month

Quite a busy schedule besides his regular pediatrician appointments, if he is sick, etc.  I admit I have been getting down about his therapy because I wasn't seeing much if any progress.  I haven't wanted to push myself too hard either with being pregnant.  Looks like things will be picking up again so hopefully I can keep up.  My other frustration with appointments is that it's hard to pinpoint a good time for Carter.  I try to avoid meal times and nap time to get him at his best, so he can work hard.  It's not always possible with his schedule and the therapist's.  Sometimes appointments don't go so well because it is nap time and he is not happy at being woken up.  You would think being a stay at home Mom would give me plenty of time- not really.

Right now besides all his therapy appointments, I am also closely monitoring his weight gain.  His growth has been quite rapid, and I have to work closely with a dietitian to keep Carter on a more even plain.  He shot up pretty fast and we are trying to slow down his feeds to get him more even.  It's trial and error.  I am also still waiting to hear back from the sleep study people on his results.  Carter saw a new pediatrician as well, because we heard she was great.  She gave me some more great information (I'm all about resources) and gave me a list of things to do.  Carter needs to see an orthopedic doctor here soon, because he isn't walking, to make sure his bones and hips are growing okay.  I also need to work with one of our therapists on ordering some more equipment.  We need to look at getting a good stroller for Carter with good support, that can also sit him as he grows bigger.  I might also look at a bath chair, a better car seat and more.  One thing I have been really struggling with is where to put Carter during the day.
I want to get him something like this, so he can sit up while being supported and have a tray so he can play with toys and/or look at books.  This will really help out when the new baby comes, so I have someplace safe to put Carter.  Right now, he sits in his swing (which he is way too big for) or he lies on the ground with some toys, or I prop him up in the corner of the couch which needs supervision.  It would be nice to have something to put him in without having to hold him or supervise him constantly.  He is still wobbly while sitting up.  I think this would help engage him more.  Insurance usually only covers one piece of equipment at a time, so I'll probably start with this.

Some Things I Learned
-at age 3 insurance will cover diapers, and Carter will start attending preschool and switch all services and therapy to the school district
-once our income no longer allows Carter to be covered on Disability Medicaid, there is a DSPD waiver that would allow him to still be on Medicaid because of his disabilities.  The problem is......the wait is 5-7 years in Utah.  I better get started on the application.

In the meantime, we are living life and trying to enjoy the moments that make us laugh instead of focusing on the trials and hardships.  Keep posted for Monday....we hope to take an early peek at our new baby to determine if it's a girl or boy.
P.S.  Anyone else's kids cry really hard and then have seizures?  Carter seems to be crying more often and really loud too.  I notice that seizures seem to happen either during or shortly after.

Friday, November 4, 2011

Sleep Study

Last night was probably the worst night I've had in a long time.  Carter had to go in to Primary's overnight for a sleep study.  We have heard him holding his breath and think he may have sleep apnea.  He also wakes up a few times at night either crying or just fidgeting around, and we wanted to see why.  I had to reschedule this appointment a few times because he was sick and I was also dreading it.  We had to check in by 8 p.m. and I was the parent that had to stay with him.  My hubby has a later shift at work so he couldn't be with us.  They weighed him with his PJ's on and he was over 28 pounds (I swear it's different almost everyday) and he's over 35 inches long.  They took him back to the room and started hooking him up to all the stuff.  Unfortunately I did not get a picture because right when they were done the lights were off and it was bedtime.  They put about 36 leads on his head and/or body; they were doing a full EEG all night long which is to monitor seizure activity.  The other leads were to monitor if his leg twitched, if he snored, etc.

They also put a canola in his nose with a stick that pokes out, to see if he is breathing through his mouth and if there are delays.  They tied two belts around his chest to monitor his chest breaths, if there was sleep apnea or delays in his breathing.  He looked pretty funny actually, but he was not too happy when they were done with him.  I hooked him up to his feeding for the night, then turned out all lights but one to read.  It probably took him 30 minutes to fall asleep, and that was the beginning of the end.  It was the longest night ever of my life, it just dragged and dragged.  I could hear Carter's breathing, his moving around, scratching the bed, laughing, sometimes crying very loud....there is a reason we don't share rooms.  I felt bad for him, but I have to admit, more for myself because I am pregnant and they had just a hard recliner chair that pulls out into a bed.  I tried pillows, different positions, blankets, but nothing seemed to work.  It's not that I'm that big yet, it's that that "bed" is that awful.  The night techs also came in several times throughout the night, so I really don't know how much I slept. 

They have you check out at 6 am, which seems like a ridiculous time to me.  They woke Carter up with a thumb prick, so mean!  They unhooked him from everything and then I bundled him up and drove home.  It was still pitch black outside and I was so tired, I didn't know if I would make it home.  I picked up some breakfast sandwiches because I was starving, but upon arriving home I immediately threw up.  Soo fun.  Thankfully Carter slept in the car and went almost right back to sleep.  He slept until 10 am which I am thankful for.  We don't get results for one week on the EEG and two weeks for the sleep study.  They did say he had several episodes of sleep apnea, but I'm not sure how bad.  I am glad we did it and got it done, now I hope I never have to repeat that again.  I will post his results when we hear back.

Tuesday, November 1, 2011

Halloween!

Happy Halloween 2011!  This picture is of Carter as The Hulk, next to him is his beautiful niece Brittlyn (11 months about) as a cute flower (her mom was a bee).  Next to her is Bradyn less than 3 months old as Darth Vader.  Then next to him is his brother Peyton, 2 1/2 years old as Chubaca.  My husband and I took Carter in a stroller trick-or-treating along with his 3 cousins, their parents and Grandma Devey.  We had a blast, especially watching Peyton try to enter all the houses and take candy.  Carter was good and mostly enjoyed the walk.  I enjoyed the experience, it reminded me of being a kid.

Thorup Halloween party- we threw on costumes right before the party.  I was a Queen fairy, Chris was Rambo and Carter of course The Hulk.  I had wanted to wear a skeleton shirt with a baby skeleton on it to show I was pregnant, but that didn't pan out.  People knew I was pregnant anyway I guess lol.

Sunday, October 23, 2011

Sick Boy

Poor Carter has been a sick boy lately- we has had a cold and cough basically for 3 weeks now.  A few days ago I thought he was getting better but then Friday his runny nose and cough came back even worse.  That night he coughed almost constantly and we tried to keep him upright.  We ran a warm humidifier, rubbed Vicks on him (feet, chest, back, neck), gave him some Tylenol, etc.  He did not sleep well and was very sick.  In the morning I noticed he was breathing rapidly so we took him into an InstaCare. 

They tested his oxygen which was normal, but he was still breathing apparently faster.  So then they ran a strep test- it came back positive immediately- and then they did a breathing treatment on him.  Even after that his oxygen stayed the same.  They did a chest x-ray and saw something in his lungs.  After a few hours there, the doctor recommended we go to Primary Children's since he could do nothing further at his clinic.  We went straight there and stayed in the ER another 3 hours or so.  They started him on oxygen since he was breathing so hard, and ran a bunch of labs.  Eventually we were admitted to the 3rd floor and given a room so he could be watched overnight.  His chest x-ray was not yet determined if it was pneumonia or aspiration, but they gave him antibiotics anyway to treat the strep as well as possible pneumonia.  They gave him fluids as well as oxygen to keep him comfortable.  Before we left that night, he seemed to be breathing harder again so they suctioned him out several times.  He hates it and gets so worn out after it, he usually falls asleep.  Since we knew he was in good hands, we went home to get some rest.

We ended up getting 4 different calls over the next few hours, so we didn't sleep as well as we had hoped.  They had decided to send Carter down to the PICU (intensive care unit) for more intensive oxygen and breathing therapy.  I guess while down there, he also was not responsive and was not waking up.  They seemed quite concerned about this, but I'm sure he was just exhausted.  When we came back in the morning, we were nervous about how he was doing.  By then, he was doing much better and was not breathing so hard.  They continued to wean him off the super high flow with humidity, and he tolerated it just fine.  The nurse there was great, but the room was kind of awkward and not comfortable.  My parents visited him and gave us a break so we could go eat.  At about 5 p.m. they finally transferred him back upstairs to the 3rd floor once again.  He did great with his meds and bolus feeds, and his breathing was much improved.  We left that night feeling much better, confident we would go home the next day.

In the morning we came back, and he was doing much better.  He was more active and awake and on a pretty low flow of oxygen.  We tried taking him off to just room air, but he dropped pretty fast in sats.  We decided rather than stay a few more days just waiting for him to get off, that we would come home with the oxygen.  They gave him a flu shot and a prescription before we left to further treat his strep.  While we had not expected a weekend stay at the hospital, I am glad he was well taken care of.  He is still really sleep and isn't awake for long, but he is in good moods when awake.  The docs said he should be feeling much better by mid to end of this week, and should only be on the oxygen at a week max.  We will follow up with his pediatrician to determine when we can take him off it.  In the meantime, to avoid spreading his cold and strep, we will be home and recovering.  I'm crossing my fingers that we both don't get it as well.  The docs determined that he probably doesn't handle colds as well because of his low muscle tone and aspiration issues; he really doesn't handle the mucus well at all.  Here's to hoping he doesn't get sick anymore this year.

Monday, October 17, 2011

Baby #2

8 weeks
We are happy to announce that Carter will have a sibling the end of April.  I am 12 weeks along and due April 29th- we find out soon the gender and are very excited.  While nervous at the prospect at having 2 children, I am excited for the close bond I am sure they will have.

Friday, October 7, 2011

St. George Trip

We had a fun girls & kids trip to St. George to see my sister Brooke (far left in the green) and her newest baby Bradyn.  We also went to see The Little Mermaid at the Tuacahn Theatre.  I drove up in the truck with my mom and Carter, and Amber drove up with Krystal and Brittlyn in my mom's Pontiac.  Carter was a gem during the ride, and most the trip as well.  We enjoyed going shopping at Krumpets a cute home decor shop, and the outlet malls.  Surprisingly with all the kids, we were able to do a lot of stuff.  We also went swimming, made a cute craft, went to the park, watched General Conference, went to the show, went on a nice walk in the canyons and got yogurt at Crave, and more.  My parents own a second home in St George, and my sister and her husband and 2 boys rent it out while attending school down there.  It's nice to have it so that we can vacation there as well.

It was fun watching the 4 cousins look at each other, and play together.  It was a nice way to get out and enjoy the scenery and some new things together as girls...and babies.  Peyton is almost 2 1/2 years old and he enjoyed playing a lot with Brittlyn who is 9 months-they even kissed a few times.  Carter is always content to chill on his own, so he spent a lot of time on the floor, in his swing, or a saucer toy my sister had.  Baby Bradyn is so adorable and I miss holding him already.  Next time girls-no babies!!

Tuesday, October 4, 2011

My Thoughts on Motherhood & The Journey

I have been thinking off and on about motherhood for the past while, and I thought I'd share some of my thoughts.  When I found out I was expecting Carter I was so excited, even though it was a surprise.  I spent the next 8 months reading books, talking to people and getting all excited.  Near the end of my pregnancy I had several things that got in the way of really enjoying my baby showers, which should be the funnest part of the pregnancy.  As the end approached, I remember getting nervous and finally a little scared.  I wasn't sure what to expect as he was my 1st, but I knew I was still excited.  I looked forward to cuddling my little boy all day long, and just knew for sure he would fill my heart to brimming with love and fulfillment.  My husband Chris was also excited, but I think he knew a little more than me what to expect the first while as he had 2 little sisters.  He knew about the crying, the lack of sleep, the diapers, etc.  I was just all goggle eyed thinking of this tiny warm person that would be all ours, and was sure I would just love it.

I was induced at exactly 40 weeks on my due date, December 8th 2009, because I had high blood pressure.  I checked in that Monday at 4 pm and my Mom took me in because Chris was at work still.  He came about an hour or so later when I was already hooked up to my IV and getting ready for labor.  I won't go into too many details about the birth, but it went smoothly for me and I felt pretty much nothing.  I had Carter at 4:12 a.m. and he looked a little bluish gray to me, but I guess that was normal.  While they were checking him out, I was trying to see what was going on but the doctor was still working on me.  I heard him cry a little as they tried to get him to pink up, then they said they would need to check him out further in the NICU and would call me later to tell me what was going on.  I remember I wasn't too concerned yet, and I asked if I could hold him quickly for a picture.
After the nurse took the picture, they whisked Carter away and Chris followed after.  The nurse cleaned me up and transported me with all our stuff (we had too much) to my room in the post delivery department.  I got a call that they would still need him for a bit, and Chris came to where I was and showed me some pictures he had taken of Carter.  He looked really skinny and had kind of reddish hair; he was 6 lbs 10 oz at birth and 20.5 inches long.  As we settled in, still not worrying, I talked to a few people including my mom on the phone and was still okay.  One of the main doctors up in the NICU came down and asked our permission to run an IV through his belly button to run some tests I think.  She said they had concerns and needed to keep him for awhile.  I went to see him in the NICU a few hours later, and he was all hooked up and so tiny.

As we talked to the doctor and nurses there, we realized that something was definitely wrong.  That sounds stupid now, but I didn't really get it for awhile.  He had an oxygen helmet on, as well as an IV through his little hand and belly button.  The doctor we had spoken with originally told us to plan on being here for 2 weeks, and that he had pneumonia and some fluid in his lungs.  My memories are still a little hazy of that time, probably from exhaustion and emotions, but it was quite a rollarcoaster.  He was indeed there for 15 days, we went home the day before Christmas Eve.  He came home on oxygen and we had to adjust to having a 2 week old that we still felt like we didn't know, as well as his oxygen needs.  I didn't get to hold him for a few days at the beginning, and even then it was only a few hours a day.  They needed to keep him as still as possible and not agitate him.  When we took our new little baby home, I was filled with dread not excitement.  What I had thought would be a normal and healthy experience, had already been so exhausting and draining in every way.  Carter was a good baby, and slept most the time except to eat.  I didn't hold him much at home because it seemed easier to keep him in his bassinet hooked up with his oxygen and such.

Christmas was kind of somber because we were home for awhile, and the postpartum started to settle in.  I struggled with depression for a few months, and it only got better with talking to people including my husband and by taking anti-depressants.  I found that I was resentful of Carter, because of what we had gone through with him.  I had a hard time bonding with him and holding him, and feeling love towards him.  I knew these feelings weren't quite normal and so it was good I sought help.  I won't go into too many details, but it was the hardest time I have ever gone through.  I can completely empathize with those that have had postpartum, the baby blues or whatever they call it now.  It can be very debilitating and scary.  With motherhood already off to a rocky start, I felt like I was behind in getting to know my baby.  As time went on I held him more and felt more connected.  But then we started noticing things along the way that weren't quite right.  Carter hated tummy time and never rolled over, and we noticed his head started getting flat.  I took him into a craniofacial doctor, but he thought it would round out as he rolled and sat up.  Well, months went on and Carter never rolled.

At around 8 months of age, we took Carter back in and insisted he get a helmet.  He had it for almost 3 months I believe, through the holidays and almost his 1st birthday.  We were consistent and kept it on him 23 hours a day, but it only grew out just a little.  At his 9 month pediatrician check up, the doctor was concerned he was quite behind and suggested we start early intervention.  Carter had started sitting up pretty good at about 8 1/2 months but was still very wobbly.  DDI came out and did an assessment on him and determined he qualified for services, because he was at about a 3 month old level.  I was kind of devastated at the news, thinking I had done something wrong.  It is real easy as a mother to feel guilty and blame yourself.  As we started therapy, I kept going back to the early days blaming myself thinking he needed therapy and his helmet because of me.  Maybe I didn't do enough tummy time, didn't hold him enough, I put him in his bouncer too much, etc etc.  At 10 1/2 months Carter suddenly had a seizure, and we met with Neurology and had an EEG done.  They diagnosed him with epilepsy and started him on Keppra.  Less than a week later, I had just come out of the shower to find Carter seizing horribly.  He was getting all stiff and had turned blue; I rushed him to the living room to lay him down and called 911.  He threw up during this time and I rolled him to his side.  The next 5 minutes or so were the worst of my life.  I was alone with him, screaming and sobbing on the phone to 911 as I tried to perform CPR on Carter, not really knowing what I was doing.

The EMT's rushed into the apartment and started working on him, as I rushed to get dressed as I had just showered before this happened.  They said it took them about 30 seconds to get him breathing again, and he was rushed in the ambulance with me to Primary Children's.  Chris rushed behind us from school, panicking I'm sure as I was.  Carter ended up being in the hospital for 3 nights (over Halloween), as we monitored his breathing, seizure activity and revved up his Keppra.  He slept most that first day, but seemed back to normal after that.  I was nervous bringing him back home, but thankfully he seemed seizure free for some time.  As time went on, we added another seizure medication, took him off the Keppra, and added another.  His seizures have been called generalized by the neurologist, and they suggested we meet with Genetics to find out what he had.  He had seizures almost daily, some times not, but never as bad as that one he had had.  Through several doctors and nurses, we were able to get rushed into Genetic Metabolic with Dr. Warnock.  After considering Mitochondrial disorder, we discovered end of April 2011 that he had 1p36 deletion syndrome. 

His life has been a bit of a rollarcoaster, full of doctors, medicines, appointments and therapy.  I have gotten very involved in his care as I am home with him all the time.  His seizures are still not controlled, and we will probably be doing the Ketogenic diet here in a few months time.  Through his therapy, he has made some small gains such as rolling both sides and playing with more toys and looking around more.  He has come a long way, but still has a ways to go.  It took a lot of time and work to find out what Carter had, but the diagnosis doesn't really change who he is.  He is still my adorable little boy who loved to spin toys, and now loves a lot of different toys.  Sometimes the seizures seem to take away his awareness and energy, but then he comes back and smiles at me in his sweet way.  I know I have told some of this story before in earlier posts, but I've been thinking alot about his journey and where he is today.  His G Tube was obviously a great decision, because he now weighs over 26 pounds when he was 23.  He is looking around more, grabbing more and seems more engaged in life.  Motherhood has been a struggle for me as I have not had a "normal" experience.  Sometimes I get mad at why it happened to me and Carter and Chris, and I get down on myself thinking I'm not doing enough to help him progress.

I know a lot of women enjoy motherhood, but for me I still really have to work at it.  Carter is a lot of work in the sense he is like 26 pounds of dead weight and I have to carry him around everywhere because he can't crawl or walk.  His feedings are now easier, but the equipment is cumbersome sometimes.  I have gotten more comfortable going out and about, but it isn't easy with having to carry him.  It is also hard with kids like him that are disabled, because a lot of days you don't get much back in the way of feedback.  I can read him books, play music, play with him and take him on walks and not get much of a response back.  It can be very frustrating and some days depressing; it makes it hard to keep him entertained.  Some days he does great and looks at me a lot and seems happy, but then he retreats back again into his shell.  I know it takes a lot of work for him to do anything, so I'm glad for the times he smiles and looks at me.  I have grown to love Carter so so much, but most days are still really hard.  I just want the best for him, to be seizure free and able to walk and run around and play.  I want him to be able to enjoy life and feel comfortable in his body.  Motherhood to me has been such a learning process, certainly not an easy or always enjoyable one.  A lot of days I find myself very bored, because Carter is quiet and can't talk or babble and is content to just sit and play with toys.  I've had many people say how jealous they are and that they'd trade kids with me for a day.  That can be hurtful, because I would give anything to have a kid that can run around and go crazy and have fun.  It's funny how when you don't know how it is, you always wish for the other side.  I wouldn't trade Carter for anything, but I can always hope for more for him.

Tuesday, September 27, 2011

My Favorite Nurse

I have to give some praise to my favorite nurse of all time...Beverly Krensky.  She works at Primary Children's Rehabilitation department, where she manages children with neurological conditions. At the University of Utah, Beverly Krensky manages the rehabilitation needs of adults with childhood onset disabilities. This clinic offers continuity between the pediatric and adult rehabilitation systems. She also specializes in spasticity management, offering treatment with oral medications, intramuscular injections of Botox and phenol, and baclofen pump management.

My mom was at the Festival of Trees last year, and talked to a mom with a child in a wheelchair and somehow the name of Dr. Gooch came up.  My mom suggested I go see her, so I did with some hesitation.  I just thought it would be yet another doctor to get confused about, and not get much help.  Beverly is Dr. Gooch's nurse practitioner, and she was so helpful from the get-go.  She is very encouraging, helpful, positive, and most importantly she gets me to the people I need to see.  With her help, Carter has been seen by OT, PT and feeding at the IHC Taylorsville Clinic.  Through that help, Carter has also gotten his very own stander.  She also helped us get in touch with the swimming specialist (who we are still a little iffy on), she facilitated the swallow study that in turn helped us to get the G Tube for Carter.  She also is helping us to get a sleep study done on Carter, among other things.  I love her help and contacts; without her I would be lost.

I will also be finally seeing a wonderful pediatrician thanks to her advice.  I have really struggled with our pediatrician because he is young and busy, and has no clue about Carter's syndrome.  Because of Beverly, Carter has gotten into the people he really needed to see and we got a lot done.  Since he has gotten his G Tube, he has already gained 2 pounds in less than a month.  At our appointment today I had some concerns about his diet, so she instantly had a dietitian come to talk to me.  She gets things done, gives you the information and numbers you need, while remaining informed and supportive.  I appreciate her hard work, her dedication and love.  I am sure she will be a part of Carter's life for some time now, and I'm so glad he has such a wonderful nurse to take care of him.  She helps keep us ahead of the game and prepared for what is to come.

Monday, September 12, 2011

I'm Not a Fan...

So Carter has had his G tube now for over a week, and I still don't like it.  Yes, I am more comfortable with it and how it works, but I don't like it.  I kept thinking that it would be such a great thing, and yes it is in ways, but it is so so gross.  I know that sounds immature, especially because I'm the mom, but it really is.  Carter has been getting a lot of gas and cries more, so we have to do what's called venting.  Basically you put a big syringe in his tube, unclamp, and then let the air bubbles come out.  You slowly pull back on the plunger to pull it out.  You do get some food/water with it (gross to me!) but you are basically trying to get out the air bubbles.  It's frustrating because I feel like how is it possible that he gets so much air during a feed?  I mean, it's going straight in his stomach right?  We also make sure the syringes are brimming with the formula before inserting, so I'm confused.  The nurse also made it sound like it shouldn't be that bad.  I guess I might need to start slowing his feeds down, or use the pump and let it do the work.

A bolus feed is what we do during the day, and it's where we control the flow and slowly push in the PediaSure.  We do 5 ounces in like 10 minutes, but usually he seems fine with it.  It's a little later that he'll cry and we get a lot of gas out.  I guess until his stomach stretches more we'll have to slow it down.  I feel bad for him because he is in so much pain sometimes.  It's hard to predict because some feeds he never has a problem, and others he does.  We do the same amount each time, and about the same time too.  Oh well.  I guess it's a learning progress.  My other issue is that the PediaSure smells so bad; I don't know why but the smell drives me up the wall.  So when I have to feed him, it's kind of hard for me.  We've tried the different flavors too (even though he can't taste it) and it's still gross to me.  Cleaning the syringes and stuff can be gross as well, but I'm sure eventually I'll get used to it.  We had a night where one of the ports opened up and the formula spilled out all over his bedding and clothes.  It was so gross, and I felt so bad for Carter that he was sleeping in that.  We had no idea it had spilled out.  The pump only alerts you if he has pulled something out, not if it isn't actually going anywhere.

We have been weighing Carter and he seems to be gaining weight, and we have noticed he is more alert and is more into touching things and grabbing.  It's a plus, but on the downside he gets super frustrated now with not being able to do everything he wants to.  If we take his toy away to take him somewhere, or move him he gets super mad.  It's cute, but interesting.  I know this G Tube is a good thing, I just wish he could go back to eating "normally".  I wonder if he knows we are feeding him, it's just a strange thing.  I use chap stick to help stimulate his mouth as well as brushing his teeth to keep it moist; we also feed him in the highchair so he can associate it with feedings.  I have tried feeding him some yogurt and pudding, but he isn't hungry and seems a little weirded out by it.  I'm worried he will lose what capabilities he had; I'm anxious to meet with his feeding specialist again to go over what we can do to keep working on his skills.  For those that have used a G Tube or been around one, this probably all makes more sense.  I guess I am a little resentful that we had to take this route, but I'm also thankful we have the technology to still feed him and get him what he needs.  I'm hoping with some more training, our parents will soon be comfortable enough that we can have a break again one day.

Sunday, September 4, 2011

G Tube Surgery

The day was finally here, Carter was scheduled to have a PEG, which is a G Tube placement.  It is a simpler surgery and less invasive overall, so we opted for that.  We went in on Friday around 11am and they took his stats (23 lbs and over 33 inches long; 8% in weight).  Then we changed him into his pajamas and waited in the pre op waiting room for a while.  Then the anaesthesiologist came and explained how she would be putting him under with a gas mask and she would be with him the entire time.  Then the doctor and his assistant came and told us to follow them.  Carter had been napping on me and then sort of woke up a little when I handed him over to the anaesthesiologist.  I was quite nervous and also sad.  I know this was the best option to help him gain weight and not aspirate, I just didn't know what to expect afterward.  I hoped my little guy would still be the same.

We waited in the other waiting room for about an hour or so when they called our name to have one of us go back.  I went back through the blue then the yellow doors to see him.  He was still asleep but I guess had woken up a little.  The nurse was keeping track of his heart rate, oxygen etc while she waited for him to wake up enough to go to the RTU (rapid treatment unit).  While I was there, Carter woke up a little but seemed extremely agitated.  She had to give him quite a bit of medicine to calm him down.  He has this tendency to hold his breath and go blue when he is in pain before he will cry it out.  It can be scary to watch, and he kept doing it that the nurse had to put a mask on him, which he didn't like.  To take I break,  I then switched with Chris because it was hard for me to watch.  I went to eat something, and then we switched again.

Finally, after some prodding and waiting (about 2 hours overall) Carter was awake and mostly pain free.  So then the nurse wheeled his bed-crib as we followed her to the RTU.  We were in room 106 and they started to set us up.  Carter wanted to sit up and he seemed pretty cheerful at this point.

When I first looked at the site, where his hole was or stoma as the nurses call it, it wasn't as gross as I had pictured.  I won't show you here, but it wasn't too bad.  Things had gone well, the actual incision only takes 7 minutes or so.  He played a little with his favorite toy while lounging, and we met our nurse and tech for the night.  They came in every few hours or so to check his stats and such.  They had regular IV fluid going, but then switched to PediaLite at about 6 pm through the G Tube.  I set it up so I could learn, and it wasn't too bad.  Since he seemed to tolerate it well, they switched to PediaSure.  They ran it all night long for 12 hours, at about an ounce (30 cc or ml) an hour.  We are starting out low so his stomach can tolerate it.  They did his meds around 9 pm, and Chris helped with that.  One parent had to stay overnight, so I asked Chris if he could.  I hadn't been sleeping well recently anyway, so I wanted to go home and get a decent night of rest.  Chris's parents and 1 sister Angela brought us dinner and visited for a bit.  My parents have been in St George and Lake Powell for quite a while, so they weren't able to be there for him.  They did call me from Powell that night to see how he was doing.

I went home and slept quite well, and came back in the morning about 8 am.  Chris was still sleep, but Carter was in his crib wriggling around.  He had had some pain during the night, so they had given him Loritab and such.  He seemed happy to see me, and his night feeding went well they said.  At about 10 am, they came in to start a bolus feed, which just means they do a feeding in like 45 min or so.  I helped hook it up, but I didn't yet know how to work the pump.  He did well, and it went in in about 40 min it was 4 ounces.  Then the wound nurse came in and helped us change his dressing and clean him with sterile water and q tips.  You do this once a day for the 1st 8 weeks.  She gave us some more training, then gave us our emergency kits.  Then the nurse came in and gave us final instructions, paperwork, and formula to get us through until I can get to WIC.  We gathered everything, asked our questions, and went home around noon.

We got home and soon had to get ready for another bolus feed; he has to be fed every 3 hours during the day so a total of 4 bolus feeds.  Well, we didn't have our pump yet, so we had to do it with just the big syringe.  Needless to say, it did not go well at all.  We hadn't actually done it before, just seen it in pamphlets or shows.  It started pouring in way too fast, and Carter started screaming from the gas and pain.  Before we could clamp the tube, it all came pouring back out all over our couch and Chris.  Not very fun.  Carter screamed off and on for a while while we tried to figure out what to do.  We kept the tube unclamped so the gas could escape and the food, but it wasn't coming out super fast.  We tried to take some out with a syringe, but not much came out.  The nurse was on the phone with us trying to help us, while we were trying to stay calm (not really).  We gave Carter some Loritab and he finally calmed down a little.  He was given a priesthood blessing, and in the meantime, I was chewing out the home health company to get our pump there pronto.

The delivery came, but I guess you need a nurse to help set it up and tell you how to use it.  I was pretty mad at this point at the miscommunication.  We didn't dare try the syringe again, so we tried giving Carter yogurt but he didn't seem hungry.  The nurse finally came about 8pm, so Carter hadn't eaten since 10 that morning.  She set it up, showed us how it works, and helped us do his 3 meds, and then set up his night feed.  She said she would come back in the morning to help with his first bolus feed, and then gave us their 24/7 number and left.  Well, we heard his monitor beep an hour later, it had stopped.  We tried calling the number, and while waiting to hear back, Chris figured it out.  The nurse had set it to run for just an hour instead of all night.  Well, it took them 40 min to call us back.  Good customer service?  I think not.  Not a good thing if I really need to talk to them.  The machine ran smoothly the rest of the night, and we woke up in time to turn it off.  It will shut off automatically so no air goes into his stomach.

The whole night time process of getting his meds in him and all the flushing of water and clamping and un-clamping took almost an hour.  I was pretty exhausted by the end of it, and frustrated.  Since Chris works nights, I will be doing this night routine all by myself.  I know things will get easier over time, but I am pretty scared about the whole thing.  I am worried that if I forget to clamp the food will go everywhere.  I am worried he will pull it out during the night (yikes!) or something.  It's such a big change and I'm feeling overwhelmed and scared.  I can't really get help from family because they need training too.  I hope we can get the hang of this, and quick.  I don't foresee us ever being able to go on dates again.  They have a backpack you can take around with you, but honestly, who wants to set up a feed and have to flush and clamp and unclamp in public?  Or at someone else's home?  He has to be hooked up to everything by his bedtime which is 8....I'm just feeling pretty down about the whole thing.  My mom has been out of town for almost a month and I miss her.  She will be home soon, and hopefully once I train her she can help me at night for a while.  We also need to switch some of his meds from tablets to liquids so it will go much smoother.  If you don't see us on Facebook or church for a while...you'll know why.  I am tethered to my mini hospital at home.

Wednesday, August 31, 2011

WIC

WIC stands for Women, Infant & Children.  It is a program that helps provide food assistance for mothers who are pregnant, or children until the age of 3 I believe.  This has really helped us when Carter was on formula because it covered the cost of that entirely.  There is an income limit that you have to meet, and then you go into an office to qualify and go from there.  They usually give you enough vouchers for 3 months, and it basically includes:  milk, bread or rice or tortillas, some cereal, juice, canned or bagged beans, fruits & veggies, eggs and peanut butter.  If the mother is breastfeeding they will cover more of a variety of food.  If the baby is under 1 they cover formula if they need it, and then once they are 6 months they do cereal and jars of baby food, like 32 cans for a month.  My only problem was that they never seemed to give me enough jars of food, so I had to buy more on my own.  They also won't let you buy the mixed kinds, it just has to be 1 basic fruit or veggie.  They do not cover jars of meat so I had to buy that also on my own.  Once your child is 1, they switch to whole milk Vitamin D cow's milk, cereal, canned beans, fruits & veggies, bread, etc.

I have not always found the program helpful or necessary, especially when the appointments dragged on for about 2 hours.  Even though you only have to go in once every 3 months or so, it can be a bit of a pain.  The thing you also have to be careful with when doing WIC, is making sure before you sign the voucher at the cash register that the amount the cashier wrote in is correct.  If it is wrong, you will end up having to pay the difference.  Always make sure you double check the price before signing.  It can be embarrassing sometimes to have all these vouchers when going through a line, because it can hold up the line a bit, but you know what you need to do what you do for your family.  I figure it saves us about $55 a month depending how much I get.  If I don't think I will eat or use everything they give me, I don't get it because I don't want to abuse the system.  You also can't trade food to people or give it to anyone else except for the intended recipients.  So technically the Dad should not be eating or drinking any of that WIC food.  Just mom and baby.

If things are a little tight, it may be worth it to look into.  Like I said, it was most helpful when Carter was under 1 year of age because formula is super expensive as is baby food.  Now that he is older it really only gives us about $30 worth of food a month for him, but it's still something.  You can always freeze milk or process the fruits & veggies for easier eating.  Also, babies can get peanut butter you just have to ask.  If your baby needs a special formula, just have your doctor fill out a prescription and WIC should cover it.  They are huge into breastfeeding there, so if you need help with that they can also help.  They lent me a pump for 6 weeks when I had Carter, which was super nice because pumps are expensive.  It was free to use and very nice of them.  Just google for the number of your local WIC clinic; they accept Medicaid cards as proof of income and you would be automatically qualified.  Otherwise just take in pay stubs to see if you do.  They take weight, height and your iron level a few times a year to make sure you and baby are growing well.

Monday, August 22, 2011

California

We went to California over the weekend for a wedding.  We flew in late Thursday night and flew back Sunday evening.  Chris's cousin Ryan was getting married to Camille, here is their beautiful engagement photo.
We were glad that we were able to go for their wedding.  On Friday we went to Knotts Berry Farm theme park, and stayed most the day.  Carter was a trooper and was really cute.  That night we went to bed early at our hotel because we were so tired.  On Saturday we attended their wedding at the Newport Beach Temple at 9:00 am, it was beautiful.  The luncheon was around noon at a country club, they had Italian pastas.  Then we went to the beach for a few hours in between; we didn't have our swimsuits so I stayed with Carter on the beach under some shade.  That night was the reception at the Double Tree Hotel, and they had delicious finger foods and cake.

We wish them a beautiful and happy life together!  Carter was so good during the entire trip and our flights; he napped when he could, ate whatever I gave him, and wasn't grumpy even when it was hot.  I love my little guy so much!  Needless to say, after all that fun, I am so glad to be home.  It is always so nice and comfortable to be home.  Home sweet home!
Carter sleeping at the hotel and in his stroller.

Thursday, August 11, 2011

Can I?

I think it has taken me a good few months after finding out Carter's diagnosis, to really feel the emotions.  I'm good at pushing things down or away so I can deal with the moment.  But lately, I've been a lot more emotional:  sad, angry and impatient.  I keep coming back to saying "It's not fair."  I know some optimist out there will say, "Nothing in life is fair."  Bite me...lol.  It's not fair that my little Carter won't have a normal life, that he won't be able to move on his own for a long time, who knows when.  That he has troubles eating and drinking, that he can't talk to me, maybe ever....that he won't be able to have friends, because he will be behind.  That he'll never be in a "normal" class, date, have a first kiss, go to Prom, go on an LDS mission, and ultimately get married and have children of his own.  I know this won't be a lighthearted post, but I feel that people should know just how hard it is.  Most days I can deal with things okay, because Carter is such a good baby...for the most part.  It's thinking ahead that terrifies me and makes me sad.

I know he is a special spirit, and his spot in Heaven is guaranteed.  I have a celestial being in my home, and I'm honored.  But I don't think I can do this, deal with all the emotions and knowing what he is missing out on.  I want more than anything to see my baby boy, 20 months now, to walk and be able to get his own toys.  To be able to hold my hand and walk beside me, to feed himself, to go to Nursery, to make friends, and to say "Mommy" or "daddy".  I'm not saying that I am limiting him in any way, because I know a lot is possible.  But the statistics, and reading other blogs, has prepared me for the future.  I will always have a baby, or at least a child that is emotionally far behind his real age.  I will have to keep doing therapy, even when I'm tired of it.  I will have to feed him, dress him, bathe him, bring him toys, entertain him, and carry him everywhere...for a long time.

I know Carter didn't ask for this, and it isn't fair to him above anyone else.  I try to do my best, to make him feel loved, wanted and well.  But when he is in bed, I feel defeated and so scared.  I know there are worse things out there, but I need to recognize that what I am going through is very hard, and I deserve to have a pity party now or then, to cry or get angry.  I know people don't understand because they don't have a child like this, but it is so tiring.  Not just because he doesn't sleep through the night most the time, but because I'm always berating myself for something I didn't get to that day, that could have helped him.  I feel like no matter how much therapy I do with him, that he'll take such a long time to progress.  It is frustrating.  I know I could do better, but sometimes just feeding him and making sure he is well, is enough.  I fortunately have a very supportive and caring husband, and parents.  I am blessed with a few special and close friends, but ones I don't see often. 

I know when you have a baby, you are already giving up a lot.  But I didn't know I signed up for this.  My dad believes Carter chose me before this life, and I don't know if that's true.  Trust me, after all that I have written, I love him with all my heart.  If I didn't, I wouldn't care like I do.  But some days I need to yell out "I've had enough!"  It may not be just because of today, but a long series of events.  I don't know if scriptures, quotes or inspiration will cheer me up right now.  I just need whoever is reading to know how hard this is..not for a pat on the back, but just to know.  I am a perfectionist, so when everyday doesn't go just right I get really frustrated with myself as a mother.  I know eventually some things will improve, but more will be added.  This is my little tantrum, thank you for reading.

Wednesday, August 10, 2011

Feeding Challenges

Carter has been quite difficult to feed lately, because he only eats pudding.  I know it sounds terrible, but it's true.  He coughed so much with applesauce that we stopped doing that.  He didn't like his yogurt or jars of baby foods anymore, so we stuck with what he liked.  I thought I was doing a pretty good job, because people kept telling me he has chunky legs and he isn't dehydrated.  We are waiting for his G Tube surgery on Sept 2nd and trying to keep him maintained until then.  Since he hasn't gained weight in about 5 months, I have been trying to get him to drink or eat as much as possible.  I went from feeding him 3 times a day, to feeding him 4 times a day and sometimes twice at night.  He isn't eating as much at each sitting, but it seems to be all he can handle.  His feeding specialist said this was quite normal.  The frustrating part is feeling like I work at it so many times a day, but overall he isn't getting much at all.  And the waking up at night part has been extremely frustrating and tiring.

His feeding specialist told me to go get a food processor and start making different foods.  Why am I so stressed out about this?  Well, because I don't like cooking at all, I am alone at nights for dinner because my hubby works, and I'm not creative with food.  I am also nervous about this change because Carter doesn't seem to like many foods, but I guess I need to at least try and introduce him to new kinds.  I know most Moms probably already do this, but since my baby isn't "normal", he provides a bit more of a challenge.  So I went and bought a food processor, a mini one, and I'm going to give it a shot.  I may not do meats because eww, that grosses me out.  She suggested making a cheese sauce and mixing it with veggies or meats.  Here is the recipe, she said it is delicious:
Melt 2 Tablespoons butter in a sauce pot over medium heat, then add 2 Tablespoons flour.  Mix until smooth.  Slowly add 1 Cup of milk to this and stir until it begins to get thick.  Add 1 Cup of cheese (cheddar, Swiss or Parmesan) to this and stir until melted.  Add salt, pepper and a pinch of nutmeg to taste.  Parmesan is great on broccoli, or if you add some pesto to this, it's great with chicken and pasta.  A combination of Swiss and Cheddar makes a really good sauce for mac and cheese. 

Sounds simple enough, and then she said to freeze in an ice tray and thaw the leftovers.  I think I'll try the cheese sauce with spinach first, then work my way to more creative things like possibly asparagus or mac & cheese.  Why cheese sauce?  Because it's high in fat, calories, calcium and more.  She said what little Carter will eat, we have to pack with as much as possible.  Any suggestions for simple things to try in my new food processor?  We are on a tight budget so I'm wondering what else to try.  I know he needs protein, so what should I try?
I know it might sound weird, but I'm having a hard time with this new change.  Some days I'm like, okay I am doing alright.  Then we have to add new things to his therapy routine, and then I get that down, and then something else comes up.  I don't complain much, but I've been getting really down about it lately.  I guess I'm nervous waiting for the next thing to happen.  Most families, not all, have healthy and normally developing kids.  Sure they have their own challenges, but it's not the same.  When I think of the future, I think that I am going to have to carry Carter around, help him dress and bathe and eat for so long...I am going to have a "baby" for a long time still and he is 20 months old.  Some days I cope well, and others like now I start to freak a little.