Halloween Fun for Everyone

(This is a re-post. Original post by Colleen of Finding Our Way Home.)

Kennedy has always enjoyed trick or treating and candy, up until last year. She is now totally reliant on tube feedings and does not enjoy eating, so the typical trick or treating is out! This year I would like to make Halloween fun still and found some great ideas I wanted to share.

Want to have a Halloween party, or celebrate with the family...how about some fun games!

~ Pass the pumpkin is a musical chairs type game involves passing small pumpkins and gourds and when the music stops the person without a pumpkin is out. Play until there is a winner. This sounds like such a great idea for kids that are in wheelchairs vs. the traditional musical chairs. You could play some spooky halloween music.

~Eyeball bouncing by decorating ping pong balls like eyeballs and having the kids try to bounce them into plastic pumpkins...give out small prizes for getting the ball in.

~Halloween Bingo ~make your own bingo pieces with halloween pictures...you could find pics online or have the kids create some themselves.

~Print out some halloween puzzles, games or coloring pages

More Halloween Activities:

Paint/decorate pumpkins ....cutting and painting too hard...try some cool Mr. Potato head kits

(here is one we did)

~Watch a halloween movie

~Read some Halloween books ~We found a cute one that is a sticker book, Skippyjon Jones Costume Crazee. You can dress Skippyjon Jones in different costumes. It is very cute! Need to practice counting...check out A Happy Halloween.

~Visit a pumpkin patch, corn maze, or go on a haunted hay ride.

Have your own costume party, scavenger hunt, or trick or treating with non candy items:

~pencils

~crayons and coloring books

~temporary tattoos

~playdough

~hair accessories or jewelry

~bouncy balls

~plastic animals

~bubbles

~stickers

Want to enjoy some tasty treats? Try tastes of lollipops, spray candies, and Fun dip, cinnamon sticks, and popsicles.

Whatever you do try to remember that Halloween is about having some spooky fun, not eating candy! Does your tube fed child still want to go trick or treating....Trick or Treat for Unicef! Help kids in other parts of the world get the things they need to survive and grow!

Charlotte's Story

Charlotte was born on June 30, 2005 after a physically easy but emotionally difficult pregnancy. She was our first child and had been diagnosed at about 22 weeks gestation with partial trisomy 16 and partial monosomy 9 after a few few "funny" findings on ultrasound and finally an amniocentesis. This meant she had an extra piece of chromosome 16 and was missing a part of her 9th chromosome. This was a very rare finding--there can be any number of unique chromosome arrangements and the doctors were unable to find any other cases like hers in the literature. We were told I would most likely miscarry before birth, or that our baby girl may survive a few moments. We were also told that this was the best case scenario, because otherwise she would "stare at the ceiling until she died" and never recognize us or have any quality of life. We also found out my husband is a balanced carrier for this translocation.

Despite this very grim prognosis and the many opinions we received that termination would be best for all involved, we chose to carry to term with the hope we would get a few moments with our first child. During the weeks that followed we constantly reminded one another that we had chosen to place our baby and ourselves in God's hands.

When she was born--much larger than expected at 6 lbs 5 oz and beautiful beyond description--we were thrilled when she cried and breathed with very minimal intervention. She stayed in the room with us after her birth and was passed from family member to family member for hours. When it became clear she wasn't going anywhere, the nurses came in and we gave her a bath right in the room.

Three days later we brought her home with the warning she would likely be with us only days.

Charlotte was a sleepy baby and had to be woken up in the night to eat. She ate well from a bottle but unfortunately did best on Nutrimagen, an expensive and smelly formula. We were thrilled when we were able to switch her to soy. She was very prone to terrible diaper rash and grew slowly, but we were happy for each day we had with her.

As the days turned into weeks, we started with the specialists. She began seeing Early Intervention at 3 months for physical therapy and also saw Cardiology, Orthopedics and Genetics in addition to frequent trips to her Pediatrician. After spiking a very high fever and being admitted to Primary Children's Medical Center for the first time in October 2005 we found out she had kidney reflux and was on antibiotics her entire life to prevent infection. Soon after she had an incident of respiratory arrest while at Grandma's and after being worked up for days in the hospital, she came home on 24 hour oxygen for apnea and pulmonary hypertension.

Charlotte was growing. She smiled and giggled but didn't make eye contact or reach for toys. She had been born with trigoncephaly, which meant her forehead had fused into a point. We had been told by the Neonatologist that this was because she had no frontal lobe to make her skull form correctly, which, he pointed out, was the center of personality. Charlotte's Orthopedist who casted her crooked foot asked us what we were doing about her head, which we said wethought was just a cosmetic issue. He sent us right across the hall to a surgeon who suggested an intense 8 hour surgery. He explained that her brain (which we thought was nearly non-existent) was unable to grow with her skull sutures fused and it would be in her best interest to have the sutures opened to allow for optimal growth and to reduce the risk of seizures and other problems. I was so happy to have a doctor looking out for Charlotte and her future, and we decided to go ahead with the surgery.

When Charlotte was 8 months old we shaved off her beautiful dark hair and she underwent a bilateral orbital advancement. It was a long surgery and was scary, but she did well and went home a few days later. A week after returning home from the hospital, on a Sunday morning, Charlotte reached for a toy for the first time, and days later lifted a baby cookie to her mouth and sucked on it. It was incredible to see her progress after the surgery. She immediately began making eye contact and smiled much more often. She was a different baby girl.

Charlotte did well for the next year, but her growth dropped off quite a bit. Doctors started suggesting a feeding tube which we fought. We were afraid she would lose her ability to eat and she loved to eat. Finally after an episode of reflux and pneumonia we decided to go for the g-tube and Nissen procedure. It took months for her to be healthy enough to place it. We will always wish we had done it earlier. After a difficult surgery and hospital stay we began using her g-tube to feed continuously at night. She continued to get her favorite foods during the day as well. Charlotte again grew by leaps and bounds. Her hair grew like crazy and she had energy to roll and play and laugh. Looking back on pictures of her before we placed the g-tube we are broken hearted. She looks so thin and sick! She was just not able to eat enough to meet her needs. We were also much more likely to get her full medication doses through her g-tube and were able to keep her hydrated when she got sick and refused to eat. There are times I still wish all kids had g-tubes.


Life with Charlotte fell into a predictable pattern over the next months. There were fevers and middle of the night rushes to the Emergency Room. There were many therapy appointments, minor surgeries, the occasional respiratory emergency and big scare, and so many triumphs. Charlotte was happy. She had a great sense of humor and a strong personality. She loved spending time with her family and big dogs. She had her favorite toys and her definite dislikes. However her health was always fragile. I hated going to cardiology appointments as I knew her pulmonary hypertension was slowly worsening and there wasn't much anyone could do about it. I hated having to turn up her oxygen during colds and seeing her struggle. I hated taking her for haircuts, because for some reason despite all the other awful things she had to endure, she really could not stand having her hair cut.

Charlotte got a little red wheelchair for her 3rd birthday and started preschool later that year in 2008. She had learned to sit up on her own and was clearly quite proud of herself. She was learning to wear her hearing aides and seemed to be understanding a few signs. She was affectionate and happy. She also had a new baby sister Ella, who was born healthy in October 2008. It was frustrating but kind of fun to watch Charlotte go through the usual jealousy that comes with a new baby. She would glare and refuse to look at Ella, throw fits when I fed her and try to bite Ella if she was able to get close enough. Within a couple of weeks she got used to having her around, but we still had to watch out for the biting.

That winter we found out Charlotte had aged out of the recommended period for Synagis, a monthly shot that helps prevent RSV. She had a hard winter, and was often sick and missed a lot of school. It was heartbreaking to see her losing some of her skills she had picked up over the last few healthy months but we held on to the hope that spring would come early.

In February 2009 Charlotte spiked another fever and her oxygen need went up. We went to the ER after much prayer and she was diagnosed that night with RSV. I was actually relieved that it wasn't heart failure. Over the next few days Charlotte did not improve and soon had pneumonia as well and was in the ICU. On Saturday February 21 we called our families together and everyone came to say goodbye to Charlotte. It was like an echo of her birth day--the family all together in a hospital room passing around a now-much-bigger baby and giving her kisses and crying over her. She passed away very peacefully surrounded by those she loved and who loved her.

Over the next few weeks I felt Charlotte so close and I was surprised at how full of light I felt. It was a special time. However after awhile the grief set in and we worked through it as a family and on our own. How grateful we were to have our little Ella with us and the support and love of our families. Grieving is a long and possibly endless process but knowing Charlotte will always be a part of our family helps us cope with the loss of our darling girl. We miss her terribly but talk about her often and her little sister recognizes pictures of her, even though she was only four months old when Charlotte passed away.

We also began to consider how and if we could continue to grow our family. Ella had been a happy surprise but doctors estimated our risk for having another child with an unbalanced translocation between 12 and 25%.

We began exploring our options, and decided to make a decision in February 2010. In late January I was asked by a woman at work if we were interested in adoption. I said yes and within weeks we had met an amazing young woman who was expecting a baby girl in May. The weeks flew by and Ava joined us on May 5 2010. Two month earlier on March 5th, I had discovered I was also expecting again, despite the fact we had taken precautions. I also felt fairly strongly that this baby was not healthy.

Our fears were confirmed and I am expecting our 4th daughter on October 20 2010. She has the same chromosomal abnormality as Charlotte. She also appears much healthier than Charlotte did on ultrasound, does not have trigoncephaly or any heart issues at this point, and her name is Lily. Although we know anything could happen, we know there is a good chance Lily will be with us for more than a few days.

We have many fears. We always wondered how we would ever handle Charlotte's appointments and hospital stays if we had other children, and now we have two other very young girls. We are not looking forward to watching another child suffer through medical procedures and are praying hard that Lily will not suffer from pulmonary hypertension and not need 24 hour a day oxygen. We also look forward to using all that we learned while Charlotte was with us to help Lily reach her fullest potential. We are excited to have another very special spirit in our home, and have to believe that this is God's plan for our family, and an extension of that commitment we made years ago to place our baby and our lives in God's hands. In the end if we have faith this experience will be for the betterment of all of us. Charlotte gave us so many gifts. We go in this time with much less sadness, much more hope, and the wisdom, experience and joy that Charlotte gave us.

Skye is the Limit

by Kayla of Skye is the Limit.


Skye is my 19 month old beautiful baby girl. She was diagnosed with Cystic Fibrosis at a 5 days old while in the NICU after she had her first surgery a few hours old due to meconium illeus.



She had a very rough first 3 months with two surgeries on her intestines and the long, long hospital stay.

Skye had an ileostomy as well as her g-tube placed and a mucous fistula from her first surgery.
Mucous Fistula is a stoma (artificial hole) that opens into the non-functioning portion of her intestines.

During this time we were taking her ostomy output and putting it through a feed pump (just like you would with a gtube) into her mucus fistula. I would put a catheter into her MF about 7cm deep and connect that up the feeding pump. This allowed her to be able to re-absorb as many calories as possible as well as keeping the entire intestinal track working while she waited to be re-connected.

Two months later she went in for the second surgery and had those good ol' intestines put back together (they chopped out 15cm because of scarring and blockages).

While she was on TPN and Lipids through IV she managed to get Liver disease. They aren't sure if this is due to the TPN or CF. Her spleen is enlarged because of this so she is also on medication for that. We spent that Christmas in the hospital and finally went home on the 29th of December 2008.



At 6 months old she went in for another surgery following her RSV and bronchitis. She had to have a bronchoscopy done to check out her lungs and they also put a central line in for her IV antibiotics. It was then that they told me she had Tracheomalacia. We spent 2 weeks in the hospital this time for IVs to clear out her MRSA as much as possible along with the chryseobacterium she cultured.


At 19 months she started to show more respiratory issues...shortness of breath, retracting, coughing, running rose ect. She stopped eating and slept almost all day. After 3 ER visits and 3 CF clinic visits trying to get them to understand that she needed help they finally admitted her. Appologizing they didn't notice it sooner.

Skye was given another picc line, this is her 6th line. IV antibiotics were given to again minimize the MRSA that is colonized in her lungs and fight off the H flu that she cultured as well. During this months time she decided that she was done eating by mouth. She is now completely fed through her g-tube. She rarely drinks anything and will occasionally have "pleasure" foods by mouth.

After 2 weeks in the hospital she was discharged. We lost one battle, but beat another.
Until next time...





She has been a fighter this whole time, and always seems to manage to keep a smile on her face no matter what the issue is.




Skye goes through hours of treatments to clear her lungs, nebulizers, and takes over 50 pills a day to maintain her health the best she can.



SADLY, at 18 months old she was diagnosed with yet another issue with her lungs...she has ASTHMA. Honestly, I did not think that she could get asthma on top of a lung disease...but as the days go on it seems that anything is possible.

And then again, at 19 months old she started to show severe signs of allergies which would put her into an asthma attack. We live in a house with animals so Skye and I have to stay away from them so she can breathe as easy as possible. She is also on medication to help her throughout the day.




As a mother I have been through more than I ever imagined, being 20 years old...19 when she was in her surgeries and diagnosed with CF. I guess this journey has made me stronger than I ever thought I could be and I grew up a lot faster than I ever thought I would have. More battles lie ahead of us, but I know she won't give up...and neither will I.





"I can't break down for her I have to make sure that I stay strong because that's what she has done for me. She has never given me a time where she has been weak at all so I don't want to do that to her."



Love,
Skyes Mommy

Fearfully and Wonderfully Made

Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.


In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.



Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.

· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

A list of Brayden's diagnosis:

Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia
Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

Read more about Brayden and his mom, Carrie, on their blog.

Hunter's Story

My name is Chrystal Wagner. I have a wonderful husband and two beautiful children. Hunter is 4 ½ years old and Caitlin is 2 years old. We have lived in Lehi, Utah for 4 years now. Now to our story-

We had tried for a year to get pregnant with our first. After much frustration we turned to the doctor to do some fertility testing. Meanwhile we decided to start the adoption process just in case. Everything showed up fine with me but my husband ended up having a problem that only needed surgery to fix. Within six months I was finally pregnant and we were elated. My pregnancy went well and I was very healthy. I went all the way to my due date before going into labor. This is where the story starts to take a turn. I was in labor for something like 36 hours all said and done. When my contractions got close together we went to the hospital. Unfortunately I was not progressing. They kept sending me home and telling me to try and relax. Finally the following evening my husband called and said he was bringing me to the hospital and that they better admit me. After about 15 hours of labor, I was only dialated to a 2 ½. I wasn’t progressing but my contractions were really bad (all back labor). To sum it all up, I should have had a C-Section. I ended up on an epideral all night and had problems with my blood pressure which in turn put my son in distress. He was finally born the next morning. The doctor used forceps to pull him into the birth canal, but then I delivered him the rest of the way. He was too big for me and I ended up with 4th degree tearing. Not a fun first time experience!! He weighed in at 7lbs. 13oz. and was 20 ¼ inches long. He had a full head of hair and was just beautiful. He had some minor breathing issues at first so they took him to the NICU. I was able to go and get him from the NICU hours later.




Hunter did fine all day other than having a really high pitched cry. We were definitely not ready for what was about to unfold. Later on in the day they took Hunter to get his first bath. My husband went with to take pictures. As they were bathing him my husband noticed that his eyes were jumping (nystagmus), and he became alarmed. He told the nurse that it didn’t look normal and before he knew it the NICU team was there taking my sweet baby away again. They did an ultrasound that night and found grey spots on his brain. They told us they weren’t sure, but that they thought it might be cancer. We were devastated. The next day they ran a CT Scan and found a Occipital Lobe Fracture (from the forceps). This had caused residual bleeding and they thought that the swelling could be why his eyes were jumping. Hunter was in the NICU for the next 5 days. Other than the fracture we thought everything was fine. Once we got him home we learned differently. We had him home a little over a week when he started displaying seizure-like episodes. We called the pediatrician and he said to bring him right down. The doctor was able to see what we were talking about and immediately sent us to the PICU. Hunter had an EEG ran and an MRI. The EEG came back normal and the MRI showed residual bleeding on the front of his brain (forehead). At this point they still thought it was all from the fracture. Hunter’s problems continued and after a 24 hour EEG and other tests we still didn’t have any answers. We decided to head to Utah and see someone at Primary Children’s Medical Center. We showed them video of Hunter’s episodes and they had no idea what it was. At 5 months old, Hunter was diagnosed with Laryngomalasia which he needed surgery for. About a month later we noticed Hunter not using his right arm. We got very worried and immediately called the neurologist. We traveled once again to Salt Lake City for another visit. Dr. Lloyd (our neurologist) consulted with Dr. Swaboda about all of Hunter’s symptoms. After putting everything together they came to a diagnosis. Hunter had Alternating Hemiplegia of Childhood. We were fortunate that Dr. Swaboda was the one consulted about our son because she is actually the expert and one of the only neurologists researching Alternating Hemiplegia of Childhood. Hunter was 8 months old when diagnosed. What a blessing to be diagnosed as early as he was!

16 months old

It was such a relief to finally have a diagnosis. I now had a direction to go in to helping my son. AHC (Alternating Hemiplegia of Childhood) is a very rare disease (1 in 1 million) and the cause is unknown. There are less than 250 worldwide cases. There are a wide range of symptoms with this disease. Most of the kids with AHC display seizure-like episodes early on that seem to get better as they get older. They are all very sensitive to their environment, i.e. wind, water, cold temperatures, light, loud noises, unfamiliar people/places, and irregular eye movement or nystagmus. Later on the children start to display paralysis symptoms. The paralysis comes and goes and can be one side (meaning 1 arm and leg) or full body (bilateral). Most of the AHC children are very delayed and have speech problems. On the severe end some don’t ever walk or talk. There is also the chance of developing a seizure disorder as they get older.

They started Hunter on Topomax hoping to get the seizure-like episodes under control. We immediately started Early Intervention to help with his delay. He continued to work with therapist through EI until he turned 3 years old. Nine months ago we made the hard decision to finally get Hunter a g-tube. He gradually stopped eating and even fought his bottle. Since then, he has gained 8 pounds and is a lot stronger. We believe that this has had a great deal to do with his current progress. In the last 6 months, Hunter has started getting into and out of sitting by himself, pulling to kneeling, and on occasion he has pulled to standing. He is very active and we are hoping that he will eventually walk. He doesn’t talk (we believe this is something that has to do with the Topomax). He currently gets PT, OT, ST, and Special Needs Preschool all in-home.
Hunter is a happy little boy that brings joy to everyone he meets. He loves music and so we watch a lot of Barney, Wiggles, and High School Musical. He also loves sports, football being his absolute favorite. He is very delayed, but we love him just the same. I love his smile-it just lights up a room!! We get comments about his pretty blue eyes all the time.

3 Years Old

So our journey to this point hasn’t gone without its struggles. I just take it day by day, trying to give Hunter everything he needs. My advice to other parents dealing with any kind of diagnosis is to be an aggressive advocate for your child. Don’t let doctors tell you that they are “developmentally delayed” with no diagnosis. I believe that is cop out. Having a special needs child has changed my life. It has made me dig deep down to realize what is really important. Hunter is a HUGE blessing to us. We cherish everyday with him and love him for who he is. My advice for those needing support: reach out to other special needs parents (they always understand what you are going through to some degree). I have also followed a few blogs that always have inspirational things to help me. Above all l would mention that my faith in family and the support and love of others is what has got me to this point.

4 Years Old

Kendall's Hope

"When the world says "Give up," Hope whispers, "Try one more time." ~Author Unknown

Somewhere I heard the quote "The end of a matter is more important than the beginning." Not sure where I read/heard it, but I like it. It definitely pertains to my darling Kendall. It doesn't matter where, when, or why all of her issues started, what really matters is that we cherish every single day we have with her, and every single milestone she hits. As a family we have come a very long way with acceptance. I can honestly say I wake up in the morning happy again. There were quite a few dark days in the past year when that wasn't the case. But, like every other hurdle in life, you keep on trucking, and eventually you get through it. You become stronger in the process. Justin and I have become closer. Kamden has learned patience. I have witnessed my 8 year old's faith evolve. He has an amazing understanding of the world and a relationship with the Lord. We have all learned how to pray. As a mother, I now treasure everything most parents take for granted in my children. And while I know we will continue to have occasional dark days, or self pity days, they seem to be spacing out.

I have decided to do a post that recaps Kendall's medical issues from the beginning. Mostly, so I can refer back to this all in one place. I wish every time we went to a new Dr. or had to go through Kendall's history, I could say "check my blog!" But that's not the case. Maybe this will help someone out there who, God forbid is in a similar situation. I also want to link all the medical terms to sites that explain them well. It will help me to gather my thoughts and our most recent findings with her clotting issues. I'll try to give the Reader's Digest version, but I've never been very good at giving the short story. Once I have this out, I vow to myself to focus on the "end of the matter" and stop wondering the dreaded "what if's." So here goes.

My son was born 7 years before Kendall with no issues. He was text book! My water broke at home on his due date. I went into labor on my own, and had a natural birth. My pregnancy with Kendall was more or less uneventful. I was 29 years old with no history of any health problems. My blood pressure was fine. I am RH negative, so in both pregnancies I took the needed injections. Toward the end of my pregnancy, there was protein in my urine, but I was assured that was OK as long as there weren't any issues with my blood pressure. Kendall was in a Breech position pretty much every time I had a sonogram.


At a routine sonogram around 28 weeks, they noted "enlarged ventricles." My Dr. didn't seem too concerned, but did refer me to a perinatologist. My whole family went into a tail spin with worry! But in the back of my mind, I thought everything would be OK since we had relatively healthy people in our family. The next day we were fit into the Perinatologist. He was a little man with annoying habits. I hated him from the beginning. He said her ventricles were "borderline enlarged" at only 12 mm and we were going to watch them. HOWEVER, she had two white spots in her heart...calcifications...and a hole in her heart. He said there was a chance she had Downs, and recommended an Amnio. He said we could abort, but there was only one state that would do it and we would have to move quickly. I remember looking at him, seeing his lips move, but no sound coming out, and everything was in slow motion. He left for a minute and told us to think about it. There was no thinking required. Before we got pregnant, we knew we would love our child no matter what. We declined the amnio and of course, the abortion. He came back in, we gave him our decision, and he handed us a card for a scheduled EKG at Children's Hospital. We went home and I cried for the next 2 days. I discovered the Internet and learned more about the heart than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

We went for the EKG and received the results the same day. Her heart was perfectly normal. A month later we went back to the perinatologist for a follow up. My mom was with me, Justin at work. That day he did a sonogram, and came back in putting on the same show. He looked like he was giving a speech to a group of medical students. He asked if my mother was my sister (clearly...she isn't....she had me when she was 38....although she looks great for her age...clearly....NOT my sister....so that just pissed me off. This wasn't a time for jokes.) I was expecting a clean bill of health, but that's not what I got. She still had "borderline ventriculomegaly" and a possible "arachnoid cyst." This time we were too late to abort, and he returned with a card to go to Children's Medical Center for an MRI. I cried at the checkout desk scheduling the appointment. Before we made it to the car, I felt I was living a bad dream. My sadness quickly turned to anger. Anger because he had already sent us on a wild goose chase with her heart, and I wasn't going to go through it again. I was firing him! He didn't know what he was talking about! He was the WORST Dr. on the planet! But still, I went home, jumped on the Internet, learned more about the brain than I ever wanted to know. I found the worst case scenario, the best case scenario, and prayed.

After letting it sink in for a few days, I called my OB and asked to be referred to another perinatologist. My nurse was wonderful and encouraging. My Dr. sent me to the Dr. his wife went to. It was a longer drive, but worth it. Within a week, we had a second opinion from a well-regarded Dr. who had bad breath, but didn't piss me off. He reviewed everything, performed a long sonogram, and said everything looked fine...but she may have a club foot. In retrospect, a club foot would have been great! We breathed a sigh of relief and enjoyed the rest of our pregnancy. Kamden was excited about his baby sister. He drew pictures of her (and being the gifted and talented kid he is...drew her with a club foot in all of them.) Our angel never turned, so I was scheduled for a c-section.

Kendall was born on a Sunday morning. She didn't have a club foot. Emails and text messages were sent out stating everything was fine. She had an apgar score of 10. She latched on to breastfeed immediately. She was small 5 lb. 12 oz. Her head was also small. But she received a clean bill of health from everyone in the hospital. She even passed her eye exam!?!?!? We went home 2 days later with our bundle of joy...prepared for sleepless nights.

The next 2 months, I enjoyed my Maternity Leave. I recovered from my c-section, breast-feeding was going great, and I was focused on losing the 65 pounds I gained with my 6lb baby! She was the best baby. She had a few nights with crying fits, but all in all, she was so mellow. She slept a lot. Her eyes were always a bit shaky, but I must have asked the Dr. 100 times if that was normal! In the back of my mind, I knew it wasn't but I didn't want to think about it. Everything was going so great. Then one evening, we placed her down to go to sleep and she had a series of startles. She did it 3 times in a row. I knew this wasn't normal and called the Dr. the next day.

At that appointment I insisted he look at her eyes. She never made eye contact. Something was off. We left there and immediately went to a Pediatric Ophthalmologist. She was diagnosed with bilateral congenital cataracts. Surgery was scheduled for the next week for the left eye, then the following week for the right eye. I went home, jumped on the Internet and learned more about the eyes than I ever wanted to know. I found the best case scenario, the worst case scenario, and prayed.




She recovered from her surgeries was fitted for glasses weeks later, but still wasn't tracking. We thought there may still be something wrong with her vision even though during her examination under anesthesia they said her optic nerve was fine and everything else was intact. She wasn't rolling or reaching, but we blamed that on her vision! We started ECI services with Vision Instruction and Orientation and Mobility through our school district. We also added PT since she wasn't really moving.

She went for a routine evaluation at our pediatrician's office. Her head circumference was small, but was growing along the curve. They were a bit concerned. We mentioned a shaking of her foot on occasion and absent stares and head drops she was exhibiting. Soon after we left with a referral to a Neurologist and the label Microcephaly. We scheduled an EEG and an MRI. We also had the EEG followed by an appointment with the Neurologist. Her EEG was abnormal, he said she had high tone, and wanted to have a 24 hour video EEG done the following week. Of course I went home jumped on the Internet, researched everything I could about abnormal EEG's, abnormal tone, seizures, and you guessed it. I knew everything there was to know about Cerebral Palsy. I found the best case scenario, worst case scenario, and prayed!!!



At the hospital following her video EEG, we were told she did not have seizures, but they were going to go ahead and move the MRI appointment for the next morning since we were already there. She got general anesthesia for the third time in her short 5 months of life. When the results were in, they escorted us back to our room. We knew something was up when the train of Dr.'s walked us to the viewing room. The Dr. on call told us she had a large cyst in her brain, possibly on 2 sides, and we should start therapy and familiarize ourselves with the term Cerebral Palsy (ha! I already had!) We went home thinking a left sided weakness was the end of the world. Our next neurologist appointment wasn't for another 5 months. That wouldn't do, so I called the nurse. I explained that we didn't understand and the 5 minutes the Dr. on call spent with us wasn't going to hack it. She told me Kendall had damage all over her brain. I cried on the phone with her and she was able to move our appointment up to the next week.

At that appointment we were told Kendall had a bilateral stroke on both sides of her brain. She had two Porencephalic Cysts that were compatible with a hypoxic/ischemic brain injury. She would never be normal. She wouldn't walk, see, or talk. She would be "mentally retarted." We cried with the Dr. and went home.

The weeks following I did a lot of research on plasticity of the brain. I also asked a lot of questions about why this happened. I found incredible support and information on Yahoo message boards (my list of them got so extensive, I finally had to unsubscribe!) I learned about seizures through my Microcephaly group. Kendall continued the next few months with the "startles" that to me resembled videos of Infantile Spasms I had seen. Two more video EEG's finally diagnosed her with Infantile Spasms. That is where our current search for the right seizure medication began.

A group I found called the "Pediatric Stroke Network" helped me discover Kendall's possible cause of her stroke in utero. Apparently she has the Factor V Leiden Mutation, two copies of the MTHFR gene, and her Homocystene levels are high. These are inherited from both Justin and I. I have tested positive for the Factor V, and Justin and I both have MTHFR. We have decided not to have my son tested in fear that it would be a pre-existing condition that would interfere with him obtaining life insurance in the future. We are all starting on an aspirin a day. And we will make sure we tell Dr.'s in the future if we have any surgeries or increased risk of blood clots. In a weird way, finding out a possible reason for Kendall's stroke has helped me move forward. I don't research causes on the Internet anymore. I mainly focus on therapy and equipment and how others with similar diagnosis cope day to day.

So that's it. The "beginning of our matter." We are blessed with a beautifully unique little girl,a true fighter, with a smile that lights up a room, a laugh that lifts your spirits on the toughest of days, and a whole new outlook on life.



Thank you Kendall. We know you are going to surprise everyone with what you are able to overcome!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

When I orignally wrote this... I was praying I wouldn't have to update...like ever. Unfortuately for us, 2 weeks ago on (August 24th 2009 at 16 months old) Kendall had really high blood sugars and was admitted to the hospital, only to be diagnosed with Type 1 Diabetes. (the auto-immune flavor) Oddly enough this result was a relief for us because it meant she didn't have Mitochondrial Disease...

Currently her blood sugars are evening out, and seizures remain semi-controlled on the Ketogenic Diet. She failed Topamax, Vigabatrin, and Keppra so the reduced seizures are welcomed, even though it has complicated the Diabetes Treatment! Our Endocrine and Neurology teams at Cook Childrens are working together to provide the best treatment for Kendall. She now smiles and laughs, rolls, and reaches, and is days away (I believe) from sitting on her own! Hard work and perserverence will pay off. We are blessed.



Read more about Kendall on her blog Kendall's Hope.

Celebrating Halloween With a Tube-Fed Child

Kennedy has always enjoyed trick or treating and candy, up until last year. She is now totally reliant on tube feedings and does not enjoy eating, so the typical trick or treating is out! This year I would like to make Halloween fun still and found some great ideas I wanted to share.

Want to have a Halloween party, or celebrate with the family...how about some fun games!

~ Pass the pumpkin is a musical chairs type game involves passing small pumpkins and gourds and when the music stops the person without a pumpkin is out. Play until there is a winner. This sounds like such a great idea for kids that are in wheelchairs vs. the traditional musical chairs. You could play some spooky halloween music.

~Eyeball bouncing by decorating ping pong balls like eyeballs and having the kids try to bounce them into plastic pumpkins...give out small prizes for getting the ball in.

~Halloween Bingo ~make your own bingo pieces with halloween pictures...you could find pics online or have the kids create some themselves.

~Print out some halloween puzzles, games or coloring pages

More Halloween Activities:

Paint/decorate pumpkins ....cutting and painting too hard...try some cool Mr. Potato head kits

(here is one we did)

~Watch a halloween movie

~Read some Halloween books ~We found a cute one that is a sticker book, Skippyjon Jones Costume Crazee. You can dress Skippyjon Jones in different costumes. It is very cute! Need to practice counting...check out A Happy Halloween.

~Visit a pumpkin patch, corn maze, or go on a haunted hay ride.

Have your own costume party, scavenger hunt, or trick or treating with non candy items:

~pencils

~crayons and coloring books

~temporary tattoos

~playdough

~hair accessories or jewelry

~bouncy balls

~plastic animals

~bubbles

~stickers

Want to enjoy some tasty treats? Try tastes of lollipops, spray candies, and Fun dip, cinnamon sticks, and popsicles.

Whatever you do try to remember that Halloween is about having some spooky fun, not eating candy! Does your tube fed child still want to go trick or treating....Trick or Treat for Unicef! Help kids in other parts of the world get the things they need to survive and grow!

Every Child Deserves Unconditional Acceptance

Children's Craniofacial Association has declared September as Craniofacial Acceptance Month.

HE'S MY SON

Yes, I am aware that September is over. But I can honestly say acceptance is something I fight for every day of the year, on behalf of my son. Born at 36 weeks, Austin was diagnosed with Branchiootorenal Syndrome, a rare genetic disorder that affects 1 in 40,000 people. BOR itself is not a craniofacial disorder it is an autosomal dominant genetic disorder that includes malformations of the ear and cysts in the neck, hearing loss, and malformations of the kidney.





As a result of BOR Syndrome, Austin's list of physical challenges also double as medical dictionary tongue twisters: Gastro-esophageal reflux disease, Microtia, Aural Atresia, Hemifacial Microsomia, Macrocephaly, Hypotonia and Tracheotomy, to name a few. These days I rattle them off with ease, I can explain what each one means to ME and how it affects Austin. BOR contributed to Austin's ears not developing, his jaw being so small that his tongue obstructed his airway, and some facial nerve paralysis.

Although Austin’s life would not be possible without a lot of assistive medical technology; he does have a life, a very full life indeed. He is like any typical 23 month old, he enjoys hanging out with his cousins at Disneyland, watches Blue's Clues, plays with blocks & puzzles and reads his favorite books.

While going for doctor visits or having therapists and nurses in his home are common for him, he remains friendly and (mostly) happy to see them. To explain how he lives his life with a Trach, G-tube or Chronic Lung Disease would require a much lengthier story than we have time and space for here, but in all of his struggles Austin has continued surprise us with his utter resilience. You can read the details on his blog.

HE HAS WHAT?

Microtia is an incompletely formed ear. It may be just a small ear, or other variations including having only a bump of tissue at the location where the ear should normally be found. Microtia may occur as an isolated deformity although it typically presents as part of a spectrum of other defects, either minor or major. It occurs more commonly in males and on the right side (unilateral). Approximately 10% may occur on both sides (bilateral) which is Austin’s case.

Aural Atresia is the closing or absence of an ear canal in the middle ear. Microtia and Atresia can occur alone or together. They can also be associated with Hemifacial Microsomia.

Children born with bilateral Microtia/Atresia often require bone-conduction hearing aids within the first few months of life. Austin got his hearing aid at 4.5 months. Although the surgeries to correct this problem used to be started as early as 4 years of age in the past, most surgeons prefer to start the external ear surgeries at about 6 to 7 years of age.

Hemifacial Microsomia is a condition in which the lower half of one side of the face does not grow normally. The most obvious sign of this condition is a partially formed ear or total absence of an ear and partial facial paralysis. The syndrome varies in severity, but always includes the underdevelopment of the ear and the mandible. This is the second most common facial birth defect after clefts.

The jaw abnormality (micrognathia) in children with hemifacial microsomia may range from a small but normally shaped parts of the jaw bone resulting in a mild asymmetry to complete absence of these structures resulting in a more severe jaw deformity. Because of the jaw abnormality these infants may be at risk for breathing and feeding problems and need to be evaluated by a specialist if there are any indications of airway compromise or failure to gain weight. Occasionally a tracheotomy and/or gastrostomy are needed to help with breathing and feeding.

Branchiootorenal (BOR Syndrome): Just like any other syndrome there is not one clear cut case of BOR, it is actually now classified as a spectrum disorder.

The B in BOR refers to the branchial arches, the area of the embryo that develops into the outer and middle ear, the neck and the lower part of the baby's face. There are several types of malformations of the branchial arches in BOR; Austin has auricular pits, which are very small holes about the size of the hole in a pierced ear, just below his ears. Normally these might be found on the neck area.

Oto refers to the ear and in particular the hearing loss that is part of the syndrome. The hearing loss can be sensorineural, conductive or mixed. It can be stable or progressive and the severity can range from mild to profound. Austin has bilateral, severe conductive hearing impairment (70-90dB).

Renal refers to the kidneys which can be abnormal in size, shape and/or structure. They may be smaller than usual or have a malformation that does not interfere with function or cause any symptoms. Austin thankfully does not have any kidney problems at present.

BEYOND THE FACE IS A HEART

Children with craniofacial differences come in many packages, but the one thing all have in common is that there is a living, breathing, feeling person behind those big named syndromes and disorders. These kids are funny, serious, loving, quirky, accepting and enduring. Each should be acknowledged for their own individual talents, as well as, their challenges.

Keep in mind beyond the face is a heart; the person you are staring, gawking or pointing at is someone's much loved child, it may be my son. Consider instead, a smile and a wave.





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There are many wonderful organizations you can consider supporting. They offer affected families medical treatment or support and resources.

Children's Craniofacial Association (CCAKids)
AmeriFace
Little Baby Face Foundation
FACES: The National Craniofacial Association
Foundation for Faces of Children

A Wink From Heaven

A compilation of thoughts written by April Moody from the blog Wink From Heaven, which is about her son Caleb...

"If, therefore, thine eye be single, thy whole body shall be full of light." ~Matthew 6:22

I remember the night I found out that our baby Caleb had significant problems. We were faced with the unbearable possibility that our baby might not be born alive. During our first glimpses of him we were filled with worry and deeper heartache than I had ever felt before. The next day I remember telling my mom, "this isn't how I imagined my family picture." I didn't imagine hanging a family picture on my wall that had someone missing. I also hadn't pictured a child whose time may be limited and whose challenges would be severe. It wasn't that I didn't want a disabled child. I wanted Caleb more than anything in the world. I had the opportunity to voice how much we wanted Caleb in many of those early doctor appointments when they presented our options. I pleaded with Heavenly Father for the opportunity to take care of our baby no matter how big his challenges were. We wanted Caleb with all of our hearts, his circumstances just weren't what I had pictured.

I remember that phrase, 'This isn't how I imagined my family picture' every time I put a new photograph in a frame, add a picture to a scrap book, or hang a portrait on my wall. My heart is filled with so much gratitude every time I look at my sweet little family inside those frames. It wasn't what I had pictured, and it is so much sweeter than I could ever have imagined. I would never have pictured how proud I would feel of Caleb for his courage, faith and patience. I never pictured how full my heart would feel as I watch my other little boys lovingly watch over him. I never pictured how my sweet little boy, whose time may be limited and whose challenges are severe, would touch the deepest parts of our hearts and change our lives forever. Just yesterday Matthew told me, 'I just get such a big loving feeling inside whenever I'm around Caleb- and I just have to hug him!'

I took our little family into the studio for some last minute pictures before Caleb went in for surgery [last November]. The pictures aren't fancy, but nothing could be more beautiful to me. I would never have pictured the exquisite delight I would feel in hanging photographs of theses precious souls on my wall...

When I was pregnant with Caleb, we were so excited to find out what we were having for our third child, so our kind friend offered to do an early ultra sound so that we could meet our new little family member! As we were driving to the clinic, I started to feel extremely uneasy. I asked my friend if he would tell us if anything was wrong. He reassured us that he would and that he would probably say something like, "we'll need to talk to a doctor about this."

As soon as the ultra sound began, our first glimpse was of our baby's' head. I immediately asked "is it supposed to look like that?" Instead of seeing any brain tissue, it was completely black. Our friend said, "We'll need to talk to a doctor about this..."

I started to cry and tried to focus on other information he gave us-- we were having a BOY!!! We were counciled to set up appointments with doctors and specialists so that we could learn more about our special little guy. Our hearts were heavy that night as we worried about our new little boy and the challenges that were likely ahead.

Within a few weeks we decided we wanted to name our little boy so that we could pray for him by name. We named him Caleb Joseph! Caleb was a righteous Israelite in the Old Testament who was always faithful and was known for his fearlessness in the face of overwhelming odds.

October 2004:

Dear Caleb, you are not going to be born for another 3 months, but you are such a special part of our family already. You have such a strong and compassionate spirit. I have felt so close to you during this time as we have been uncertain about what your birth will bring. About a month and a half ago, we discovered that you have a great amount of fluid in your brain. Our hearts have been so tender as we contemplate the possibility of only having you for a short time. Our hearts ache knowing that you may have significant problems throughout your life.

In the midst of the uncertainty, there are some things I know for sure. I know that you are my son for eternity. I know that you have an important role to play in our family and that we are privileged to be a part of it. I know that you love us and that you are aware of the deep love we have for you. I know that the Lord hears our prayers and sees our tears....Although I don't fully understand why you have physical hardships, I know that you have a valiant and loving spirit. I really feel you at times comforting me and that you want me to know everything will be okay....

This past week we had an MRI which confirmed the missing corpus collosum, a blockage causing excess fluid, and that you are missing your right eye. Getting that information broke my heart because I don't want you to have one more physical obstacle....I know that your spirit is not limited and that you have a special mission...I have seen hearts change just when people find out about you...

January 6, 2005:

Caleb was born at around 10:30 AM. His little cry was music to my ears! I got a quick glance before he was passed through a little window into the NICU. I got another glimpse of him as I was wheeled into my recovery room, and he was being prepared for transport to Primary Children's hospital. He was beautiful! In spite of the challenges I knew were ahead, I was just tickled so see my new little boy. His spirit is so big, and he just radiates with love.

Dear Caleb, you are here my precious boy! I am so full of love for you, my heart can't contain it all. I thought my heart would burst when I heard you cry after you were born. When they held you up for me to see, it was like looking at an angel! I knew today would be a life changing day for all of us - and it was. My life has been forever changed for the better because you are in it. I only got to see you for a few moments, but those moments will be treasured for my whole life.

January 7, 2005:

Dear Caleb, Today we spoke with your doctor and he explained many things to us. Your brain has not formed. It appears there is little they can do but stabilize you and prepare you to come home with us.... they don't expect you to live for more than a few weeks....at this moment I don't think my heart can bear the thought of letting you go. How can I look into that precious face knowing that my time is limited? I just want to stop this moment in time and hang on to it forever.... I wish I could choose the outcome, but I know your eternal outcome is already known. I pray that your spirit knows how much you are cherished. Each day I have with you is a treasured blessing....

This morning I got to hold you for the first time! It was like being in Heaven! I couldn't hold back the tears as I held your sweet body in my arms. I just rocked you back and forth and tried to memorize every bit of you. Your sweet spirit just seems to heal my soul. It saddens me so much to know that I may spend much of my life missing you. Do you know how dear you are to me?...Do you understand that the hardest thing I will ever do is let you go?

Today was your blessing day. We were able to gather in a hospice room with Dad and I, your grandparents, one of my aunts and our bishop.

Your blessing outfit was huge on you but you still looked like an angel....there was such a special spirit in the room and your Daddy gave you a beautiful blessing....Each of us had a chance to hold you. It was such a special afternoon. That night you weren't breathing very well and we thought you were going to be put on the ventilator again. We were told to be prepared to decide whether or not we would want to do that or just let you go. My heart was in agony as I contemplated letting you go before I was ready. Fortunately, the doctors were able to reposition you and get you breathing again.

...as I was alone in my hospital room that night I was overcome with sadness. I just can't bear the thought of losing you...I want you to know how much I treasure you and although I don't understand why things need to be this way, I know that the Lord knows our needs and will comfort my breaking heart...

January 13, 2005:

One of my favorite days was Tuesday. Our doctor let Dallan, the boys and I take Caleb into a hospice room, and Josh and Matthew were able to see Caleb for the first time!

Normally no children under age 18 are allowed, but our sweet doctor has been so kind to consider the needs of our little family during this time. Josh and Matthew were so excited and I was so touched as I watched them hold and interact with their little brother. Josh was so tender with Caleb and just couldn't stop hugging him and rubbing his face against Caleb's face. His little spirit was so full of Joy to be with his baby brother. He didn't want to put him down. Matthew was so excited not to be "the littlest" anymore and just loved holding Caleb! He couldn't wipe the smile off of his face, and he loved playing with Caleb's little fingers. The boys were able to hold and snuggle their baby for two whole hours. As parents, our hearts were so touched to have such a special time together, because even when he's home, Caleb will have to spend most of his time under an oxygen mask.

The past few days have been really full as we've been learning how to use all of the hospice equipment so that we can take care of Caleb at our home.... We are so excited to get to be near Caleb everyday! We know that even though we are overwhelmed with how we will be able to keep up with 24 hour care, our family is so blessed to have this little miracle in our lives.

Caleb was in the NICU at primary children's hospital for 8 days. He was so sweet and patient with all of us. He only needed a ventilator for a few days, then was able to breathe with supplemental oxygen. It became apparent to all of us that there was nothing more that could be done for him in the hospital, so we prepared to take him home.

It was overwhelming at first to bring Caleb home. We were surrounded by a host of hospice helpers, learned how to use a kangaroo pump, run the oxygen equipment, and tried to keep Caleb as comfortable as we could. We were counciled to pick out a burial spot, and we did. We worried if each day would be our last.... We had a birthday party for Caleb every week to celebrate his time with us, and we realized we wanted our time with Caleb to be JOYFUL. We decided not to let the medical community take our hope away. We decided that we could celebrate each day and have hope for the future instead of grieving.

January 18, 2005:

Josh loves to hold Caleb's hands and we often find him just quietly watching over him. Matty likes to sing Caleb the ABC's over and over again. We're trying not to look too far into the future and are just enjoying each day with our little miracle - even diaper changes are just sweet and fun!

Caleb has brought an overpowering spirit of love into our home. We feel so honored to be with him. Every time we change his diaper, rock him in the rocking chair, kiss his soft little cheeks, or even just stare at him through tear filled eyes -- we are reminded how much Heavenly Father must love us to bless us with this time with our little miracle. Our hearts are wrapped so tightly around our little baby. We are just so in love with him!

He responds so much to love....

and as we hug him, sing to him, or stroke his little face - his oxygen levels and heart rate always seem to improve.

Caleb has taught us what perfect love feels like. I have watched the way people linger at his crib side and didn't want to leave his presence...

April 2008:

If I knew I had to say goodbye to any of my sweet boys, what words would I want them to hear from their mom? I've asked myself that question numerous times especially during tender times with Caleb. It seems like there should be a bigger way to say "I love you"- Where are right words to say that I love them so much that it takes my breath away- that I love them so much that sometimes it even hurts- that I love them so much that my heart wants to beat for them? I know that before they were born just the "hope" of them filled my heart with joy- that when I was expecting I loved knowing that they were growing right next to my heart- and now that they are here, my heart is wrapped so tightly around them that I can't breathe.



I took Caleb to the doctor today and spent the afternoon having chest x rays. He did aspirate and as a result has Pneumonia. He isn't moving air through his lungs very well. He is on a big dose of antibiotics and is in need of a lot of supplemental oxygen. My heart has been tender as I've wondered what I should say to Caleb today. How do I tell him how dear he is to me and how proud I am of him?

But then when I wrap my arms around him, and when I'm really still, I can feel his heart telling me that he knows- and that...

"I love you" is enough.

January 2009:

I have sweet moments with Caleb when I know that I live with an angel. Even when Caleb is so sick that he can hardly move...he still has a miraculous effect on people. During his last hospital stay, I was so touched by the visitors Caleb had...visitors from within the hospital. Many doctors, residents and nurses who have met Caleb before, would come by day after day to check on him, stand by his bed for a moment, and feel his sweet little spirit. Caleb couldn't walk or talk with them - He touched their hearts... and they felt it. I felt it. One told me she had never been so touched and inspired before. I know. Me too.


This last visit was 13 days long. Nine IV's later...and Caleb still shines. I live with an angel, whose feet have never left the ground.

My 2nd little boy, Matthew, would often tell us that Jesus peeked in our windows...I know that the Lord has kept a close watch on our little family as we have been on this journey together...

Caleb is currently 4 years old!

He continues to remind us to find JOY in our journey every day!

We aren't sure how much he can see out of his eye, but we know he responds to light. We are also unsure of his hearing abilities, but I see him respond to my voice, to music, and sometimes to loud sounds. Caleb has a trach to help him breath. He also has a shunt to help drain the fluid from his brain.

Caleb is currently on Phenobarbital (seizures), Levothyroxine (thyroid) Previcid (reflux) Baclofen (muscle relaxant) and atrovent (airway) We have had him on topamax, zantac, and erythromycin, but have since weaned him off of them. We also tried Helmet therapy to help with the shape of his skull, but decided it wasn't worth making him uncomfortable when only minimal results were expected. We have also opted not to have surgeries for his cleft palate at this time.

Caleb is a peaceful and patient little boy. His whole countenance shines! He loves to be LOVED. He loves it when I rub his feet, sing to him, and snuggle him. He is so patient with us and he is patient with the challenges he faces in his little body. Even when he has hard days with his respiratory system, seizures or feedings, his little spirit still shines through. He loves to be surrounded by his family and he loves to hear our voices. He also loves it when he is well enough to be outside to feel the sunshine on his face.

For Caleb, touch is largely how he experiences the world. I've helped him splash the water in the bath tub. I've put fall leaves in his hands and helped him crunch them. I've brought snow inside and helped him build a little snowman on a cookie sheet....I've wrapped his arms around my neck and held them there when we've needed a hug...I've put his hands on my cheeks and let them melt to my skin. He loves it when I rub his feet, rub my face in his hair, and rub his chubby tummy. Caleb loves to be touched!

Our biggest goal is to simply surround Caleb with our love...

We have a vision specialist/preschool teacher who visits him twice a week. I have a consult with a physical therapist and Occupational therapist once a month so that I can continue to keep his body stretched and comfortable. Overall, though, I know that Caleb grows and responds the most to LOVE! I know that he has a happy spirit and that he wants our time with him to be joyful!

We are so thankful for our little miracle. The overwhelming love we feel for him gives us just a glimpse of the way that our Heavenly Father loves us. The tenderness of knowing our time with him will be limited is also surrounded by so much sweetness. I wish there were a "heart language" that could portray the sweetness that surrounds us as we watch our 3 boys love each other, as we feel Caleb's sweet little body in our arms, and as we feel the love that has filled our home to overflowing.

My biggest sources of inspiration are prayer, other parents, the scriptures, and music.

Two of my favorites songs are:

"I Feel My Savior's Love"

and "Consider the Lillies."

The lyrics:
Consider the lilies of the field,
How they grow, how they grow.
Consider the birds in the sky,
How they fly, how they fly.

He clothes the lilies of the field.
He feeds the birds in the sky.
And He will feed those who trust Him,
And guide them with His eye.

Consider the sheep of His fold,
How they follow where He leads.
Though the path may wind across the mountains,
He knows the meadows where they feed.

He clothes the lilies of the field.
He feeds the birds in the sky,
And He will feed those who trust Him,
And guide them with His eye.

Consider the sweet, tender children
Who must suffer on this earth.
The pains of all of them He carried
From the day of His birth.

He clothes the lilies of the field,
He feeds the lambs in His fold,
And He will heal those who trust Him,
And make their hearts as gold.

Some talks that have recently inspired me are: The Ministry of Angels by Jeffrey R. Holland, Come What May, and Love It by Joseph B. Wirthlin, and The Infinite Power of Hope by Dieter F. Uchtdorf.




***Caleb is having surgery today to get a G-tube to help him eat, and a nissin to help with reflux. Please keep your thoughts and prayers with Caleb and his family. Visit their blog, Wink From Heaven, to send them well-wishes and to thank them for sharing their special story.