A Little Blessing

Merry Christmas and Happy New Year...

2012-01-06T13:21:00.000-08:00

This post is a couple weeks late, but life is busy sometimes...So sorry. Wishing everyone a happy and healthy new year. Brandon is doing great. He is expanding his vocabulary, working on his articulation, and growing a little more each day. I am so amazed at what a great little boy he is. He makes my heart smile every day. Despite having some challenges to face here and there, he is always upbeat and is figuring out how to problem solve. :) He continues in special needs preschool, speech therapy, and gets his nightly growth hormone shot. We still have regular visits with our pediatrician and endocrinologist, along with yearly visits with the cleft team and geneticist. Busy...busy, but he is worth it!

Photo Updates Fall 2011

2011-11-25T18:06:00.000-08:00

Halloween 2011

2011-11-19T05:31:00.000-08:00

I had so much fun working on the dwarf costumes this year. It was hilarious watching all of the kids (my son, nieces, nephews, and friend's kids) follow my daughter around for trick or treating. Brandon was "Happy" this year. Hopefully next year I can think of something equally cute! :)

Farewell Miss Nicole...

2011-10-11T16:59:00.000-07:00

Tonight we had to say goodbye to Brandon's speech therapist. It was bitter-sweet. She has been amazing with Brandon and will be missed greatly, but we are happy for her as she moves on to new opportunities. We hope to see you again sometime. :)

Cleft Clinic 2011

2011-10-11T16:43:00.001-07:00

This year's visit to cleft clinic was not too eventful. Still no plans for another surgery until he is between 7 and 10 years of age. Recommendations given: continue intense speech therapy.

Soccer time...

2011-09-10T20:42:00.000-07:00

To say that Brandon is a sports fanatic is an understatement. I can honestly say I have never seen such young child so in love with sports...any sport. He is not a TV watcher unless ESPN highlights are on or daddy is watching a sporting event. When football is on he goes to get his helmet and football to wear and play with as he watches the game. When baseball is on he gets his bat and ball and practices...same goes for basketball. Friends of ours understand why we have a basketball hoop in the living room. Soccer is no exception. At his age, this is about all we can get him signed up for as far as team sports. It's a great start and today was his first game. He is definitely a little "go-getter" :)

Finally Started Speech Therapy!

2011-08-13T08:30:00.000-07:00

This has been quite the process. I was told to wait until he was three before we began speech therapy (ST). I asked his pediatrician for an order for a speech and language eval in March at Brandon's well visit. I wasn't able to get in for his evalution until the end of May. (Word of advice...keep calling. They told me I would be on a wait list, but never called me. Once I called them after about 4 weeks, they said "oh sure, we can get you scheduled".) So the initial evaluation took two sessions. I was told again I would be put on a wait list to have him begin therapy. Six weeks later I called asking how much longer, and again they said "oh sure, we can get you scheduled now". That's why I tell you, call...call...call if you need to. Don't rely on the rehab center to contact you right away since they have such a high volume of kids they see. Another obstacle I faced was I received a bill for $408.00 for his initial speech evaluation...yep $408.00!!! They claimed my insurance wouldn't cover this service. Lucky for me I do these kind of referrals in the office I work at for a living, I knew it was a matter of getting his primary care doctor to change his diagnosis so the insurance company would cover it. Insurance companies hate the diagnosis "developmental delays or expressive language delay"...FYI "apraxia" works much better. So anyways, it turns out that Brandon's speech therapist is related to his preschool teacher (mother/daughter). Yeah! They are both so awesome, I feel so blessed he has such great people working with him. We have had two visits so far. Brandon is really enjoying it. One thing we are noticing is that he loses quite a bit of air when saying certain sounds, (i.e. "sss" sounds). He struggled to blow air through a straw as the air instead comes out of his nose. I plan to discuss this with his plastic surgeon next month at cleft clinic to see if this mechanical problem is due to a structural problem with his palate that hasn't been fully repaired yet or if it's just going to take quite a bit of practice to get him used to maneuvering his tongue in his mouth to form proper sounds. Regardless, we are on the right path! I tried getting Brandon to count to 10 and sing a song so you can hear how he sounds. His attention span was not the greatest, but I'll try to post something else later. Best I can do for now, and by the way if anyone knows how I can get the video to show without being a "side view" please feel free to share...this is new for me :)

Random Pictures...I just love his smile!!

2011-06-11T15:53:00.001-07:00

Kalahari Weekend

2011-05-22T11:06:00.001-07:00

Happy Easter! 2011

2011-04-24T15:34:00.001-07:00

Easter morning with my little man. Brief update...Brandon's speech has improved tremendously since starting preschool. He is putting sentences together, and although we don't always understand everything he says, he gets an A+ for effort. Hearing him sing "Inkle Inkle" (aka Twinkle Twinkle Little Star) melts my heart. Blessings to everyone.

First Day of Preschool

2011-03-07T16:59:00.001-08:00

Today was Brandon's first day of preschool. He qualified for special needs preschool and is now on an IEP at school. Brandon qualified for special needs preschool due to speech and fine motor delay. He will be receiving occupational and speech therapy. He attends daycare in the morning and then the bus picks him up in the afternoon for class. Such a big boy! Special thanks to the daycare workers for taking pictures of this milestone!

All ready to go...

Waiting for it to be time to walk out to catch the bus.

Taking a picture with Miss Amy. She was one of the first daycare workers to care for Brandon. He was just 4 weeks old when she met him. Time has gone by so fast.

Brandon's classmate and bus buddy Maddie!

There's the bus...

All aboard!

Painting at school. A special thank you to Brandon's teacher, Ms. Bass, for surprising me with this picture.

Happy 3rd Birthday!!!

2011-03-04T05:52:00.000-08:00

Last day at daycare for the week before his birthday...so proud of his birthday sign.

Birthday morning...opening his present.

Practicing his pitching...look at that form :)

Trying out his new toy...

Lunch with mom and dad. The waiter brought out a special birthday sundae.

Party at Frickers Sports Bar...Picture of Brandon setting eyes on his birthday cake for the first time...Loved it! Special thanks to my brother Jon and to Shelly for making such an amazing cake.

Making a wish!

So proud of my little man and how much he has accomplished so far in life. He is so amazing and I look forward to watching him grow and learn more every day.

Another trip to Cincinnati: Division of Human Genetics

2011-03-02T11:21:00.000-08:00

On January 28th, 2011 we traveled back to Cincinnati, OH to see Dr. Hopkin, a genetics specialist at Cincinnati Children's Hospital. Since our last visit there, we had done a number of genetic blood tests on Brandon and on this day we got to review the findings with the doctor. As it turns out all of Brandon's blood tests came back "normal". In my mind this is great news, however genetic studies are not 100% accurate. What I found out though is, even though genetic studies may not be diagnostic, a person can still receive a "clinical" diagnosis if they exhibit many of the same characteristics. After a detailed discussion with the doctor it was decided that Brandon meets criteria for a clinical diagnosis of Aarskog Syndrome. They will further investigate and study other conditions that could overlap with this particular syndrome, but at this time he will have the Aarskog diagnosis unless an alternate diagnosis is found to be more appropriate. What does this mean? The important part I took away from this is that Brandon is "at risk" of learning difficulties and attention problems as he gets older. In light of this information and in addition to Brandon's speech issues, it is more important than ever to make sure he gets linked well in the school system and receives appropriate services. Help Me Grow has been fantastic in preparing us for this and Brandon was evaluated for special needs preschool and has qualified. He is currently on an IEP and will start preschool on March 7th where he will receive speech and occupational therapy to help him progress developmentally. Because there are different types of Aarskog, we are unsure exactly what this will mean as far as Brandon passing any genetic conditions on to his children. I will say this...Brandon has been an amazing boy and if his kids are anything like him we will all be lucky :)

Seasons Greetings!

2010-12-28T14:59:00.000-08:00

Wishing everyone a Merry Christmas and Happy New Year!

One of his favorite gifts this year...Brandon is obsessed with sports. Christmas 2010

Lights at the Toledo Zoo 2010

Operation Smile Donation:

2010-12-13T17:42:00.000-08:00

Operation Smile: Via Sew Many Blessings Boutique...We were able to supply antibiotics and pain medication for 24 children. In addition, we donated $100 which another company matched, making it a total of $200 towards cleft related surgeries, etc...

Happy Halloween! 2010

2010-10-31T17:52:00.001-07:00

Pumpkin Patch 2010

2010-10-31T09:12:00.001-07:00

Cleft Clinic 2010

2010-09-16T17:23:00.001-07:00

Brandon in the doctor's office...

Another great visit. We met with speech therapy, plastic surgery, oral surgery, ENT, and genetics again. Brandon is right on track. Next surgery estimated between 7-10 years of age. Speech therapy to begin sometime next year. I was super excited to see that some of our new friends at clinic would be receiving one of our special blankies.

Growth Update

2010-09-16T17:06:00.001-07:00

Recent trip to see the endocrinologist showed moderate improvement in Brandon's growth. He is now officially on the growth chart measuring in at 27# in weight (25th percentile) and approximately 31" in height (aprx. 10th percentile). He is starting to lose his baby face more and more :(, but I'm so glad we are seeing some results.

First year of growth hormone therapy complete...

First picture was 2009, first shot. Second picture to the right is one year later.

Pulmonologist Consult

2010-09-16T17:02:00.000-07:00

So we were referred by our pediatrician to see a pulmonologist due to Brandon's countless respiratory infections/breathing difficulties. Allergy testing was recommended by this specialist as well as for Brandon to continue his Singulair medication and inhalers. The allergy testing confirmed that Brandon has very mild (and I mean VERY mild) allergies to oak trees, cockroaches, and milk. I don't know too much about allergy testing, but obviously these indications won't mean too much for Brandon since his allergen range was so low. Oak trees...well can't avoid them in Northwest Ohio, cockroaches...none in this house nor anywhere I would like my child to be around, and milk...well let's just say he is allowed to keep drinking it. So all in all, can't say it was a bad visit. Got some helpful tips as to how to manage wheezing episodes, etc., especially during cold and flu season.

Dr. Appointment in Cincinnati

2010-07-25T10:20:00.001-07:00

On Friday, July 23rd, we headed down to Cincinnati, OH to visit a geneticist that came very highly recommended to me. In my field of work, the doctors have referred many children to genetic specialists to confirm or rule out various genetic disorders/syndromes. Since many things with Brandon appear to be a "medical mystery" to many of his doctors, and there has still been no clear answer as to why Brandon has some unusual physical features, I decided to take Brandon to see Dr. Hopkin, a genetic specialist, to see if we could get some answers. I love Brandon with all my heart and do not NEED to know any official diagnosis for why he has certain features, but being a developmental pediatric nurse I understand the benefits to research, and also how sometimes finding out more information can help parents help their children. As Brandon continues to grow and develop, I want to be able to provide him with any resources he might need to make his journey easier and more prosperous. This visit was just one more step in that process...

After a 3 1/2 hour drive we finally arrived...Brandon was acting silly in the waiting room.

Thumbs up...so far so good. Brandon was in great spirits and did very well considering the long drive and lengthy visit.

Playing with mommy as we wait in the exam room.

Finding ways to pass the time...

The doctor came in shortly after Brandon was hiding in the cabinet. Dr. Hopkin was so friendly. He greeted Brandon and kneeled down to listen to his heart and check him out as Brandon continued sitting inside the cabinet.

A little R&R after a long day. We decided it would be best to stay in a hotel that night and drive home the next day.

So...here's what we know so far. After the doctor had reviewed Brandon's history he thought of a syndrome called Opitz syndrome. He thought Brandon might qualify for this based on his reported features. After having laid eyes on Brandon, the doctor said he was shifting his thoughts towards a different syndrome called Aarskog syndrome. Brandon has very short, pudgy fingers and toes, in addition to other features which are present in this particular syndrome. Cleft lip and palate are sometimes associated with syndromes and sometimes not. Nothing has been decided. The doctor took some pictures of Brandon and will meet with his team to share and discuss further. Afterwards he will order an extensive genetic blood test to see if any specific markers show up. It is possible Brandon has one of these suspected syndromes or none. It is also possible he has something that has not yet been discovered. Regardless, those findings are more beneficial for the genetics team and their research. Whatever the outcome, it won't change who our little guy is. I love EVERYTHING about him, including his pudgy, short fingers and toes. We will continue to love, talk, read, and play with him daily...stimulating him developmentally.

Our annual trip up north

2010-07-03T18:10:00.001-07:00

Every year, for the past seven years or so, we take a trip up north to Gaylord, MI for a little summer vacation. My family, my siblings and their families, and my parents all stay together in a large cabin that sleeps about 12-14 people. The guys like to golf, the girls like to shop, and the kids like to swim and play on the water slide. Each year is a little different; because as the kids get older, it becomes a new adventure...you never know what to expect. This year, Brandon had a blast, but experienced many time outs as he continues to express his 2 year old will power. All in all, we had a great time and made some more great memories.

And the golfing begins...

He insisted we bring along his bike ;)

Swim time with mommy...

What a little stud!

Hot tub time!

Ice cream at Mooney's...yum!

Off to see the Elk

Feeding the Elk

Another trip to the hospital...

2010-06-18T14:21:00.000-07:00

So...Brandon spiked a fever on a Thursday night a little over a week ago. By Saturday he was at the doctor's office with what looked liked the beginning stages of an ear infection. Antibiotics were started, but by his third dose of the antibiotic, along with alternating Motrin and Tylenol, the following day his fever would not let up and he was refusing to eat all day. We ended up taking him to the ER on Sunday afternoon. All the tests came back normal so the ER doctor sent us home after Brandon had received some IV fluids. His fever continued for a few more days. Extremely worried at this point, I called his primary pediatrician who wanted to see him. Brandon had lost two pounds in two weeks and was still not eating well. He did nothing but moan in my arms the whole time we were at the doctor's office, for those who don't know Brandon well...this is very unusual for him. After his doctor took a look at him it was recommended Brandon be admitted to the hospital. We spent nearly 24 hours at St. V's where he received IV fluids to help his little body fight off this nasty virus. Luckily, no spinal tap was needed this time. Turns out Brandon had enterovirus, which is a common summer virus. The physician said without the help of the IV fluids, Brandon could have endured another 3-4 days in his uncomfortable state.

ER visit

Resting after being admitted to the hospital.

Visiting the aquarium as we pass the time in the hospital.

Thumbs up by Brandon...he is finally starting to feel better.

On our way home to rest...

A little over a week later and he is back to normal...Enjoying the day watching the parade on Father's Day.

Parade Day!

First of ten suckers throughout the parade...each had a few licks only because every time he was thrown a new sucker he wanted to trade his in :)

Such a big boy. So happy he is back to himself!

Take me out to the ball game...

2010-04-25T06:58:00.000-07:00

After a busy week including two doctor's appointments, we ended the week with some fun at the Mud Hens game. I'm pleased to report that the orthopedic doctor has evaluated Brandon's bone structure and has informed us that his bones look great! Aside from Brandon being small in stature, his bones are healthy, proportional, and developing appropriately. One of the concerns with Brandon since birth was for possible dwarfism. At this point Brandon has NOT been diagnosed with any form of dwarfism . He will continue receiving his nightly shots for his growth hormone deficiency and continue scheduled follow up appointments with his specialists to monitor his growth and development. Now... if we could just get the upper respiratory/wheezing issues resolved. :)

Recent Updates

2010-04-15T07:12:00.001-07:00

First of all, I want to express how thankful I am for all of the wonderful feedback I have received about my blog. It is very rewarding to hear from others who are going through similar events in their life, as well as those who are just inspired by reading my blog. I have received several touching emails from moms around the world. From the U.S. to Australia and Peru, it’s fulfilling to know that Brandon’s journey has touched so many lives. I love receiving comments, emails, and hearing about other's stories...so keep them coming! I'm also pleased to announce that my new venture, Sew Many Blessings Boutique, is growing leaps and bounds! I am excited that I will soon be able to make my first donation from the boutique to a Cleft Charity. YAY!

As Brandon gets older, there isn’t as much new information to report regarding his cleft repairs; hence the lack of frequent status updates. I'm happy to share some additional updates though as to how Brandon is growing, developing, etc. Honestly, I see him as just any other little boy...with the exception that...he is still very little. At our last appointment with the endocrinologist, the doctor indicated that Brandon may not be responding to his growth hormone injections as well as they hoped, or he is resistant to the growth hormone. In light of that, Brandon's medication dose has been increased and we have an appointment next week with his orthopedic doctor to further evaluate his bone growth. I love that he is so little; it's very cute from a mom's perspective...but I do realize that he is a boy that will want to be bigger as he gets older. Only time will tell. We did hit a milestone this week by moving up to size 5 in shoes! In regards to Brandon’s other developments, his daycare is working with him on drinking out of a normal cup. They are also in the beginning stages of introducing potty training...OH BOY! He still has some snot/food coming out of his nose as he eats and we’re hoping to have that resolved at his next surgery when he gets his bone grafts done. However, this surgery, won't be until he is closer to 7 years of age. Brandon has made great strides in his speech development! He is saying more and more words every day. Some words are becoming much clearer and used more frequently (i.e. "No", "Stop", "Go" as well as many others), and he is also starting to express his 2 year old "attitude" lately. Regardless, there is never a day where he doesn't make me laugh and smile. He truly is a blessing!

Lastly, as I was reading some of the other blogs I follow; it brought back some memories that I wanted to share. I started this blog about Brandon's journey in an effort to reach out to others. In my personal experience as a parent of a child born with a cleft, the cleft does not define my child. It's actually amazing how quickly it becomes so "normal" for you. Sure, there are reminders when it comes to feedings and the excessive doctor's appointments, but overall, Brandon’s cleft was easily accepted by me and my family. His cleft is not something that is "an issue" in our day to day living. At times, I would forget that others who may have never seen Brandon before would be a little surprised when they took their first glance after he was born, but overall most people were very understanding and accepting. Anyone who has spent any time with Brandon knows that his personality and good nature is what draws you towards him. You can't help but fall in love with the little guy. Brandon's cleft was so familiar to me that after he had his first surgery and I laid eyes on him for the first time I cried. Seeing him so swollen with stitches made my heart hurt for him. I missed his old smile, but quickly fell in love with the new one. As a parent though, even though you love your child just as they are, you still have this part of you that feels the need to protect your child from the ignorant people in the world. I can only recall one negative comment made to me since Brandon's been born that I just couldn't forget. Brandon was 4 weeks old and I took him with me to a funeral (a funeral of an infant none-the-less). In the lobby a woman waived to me across the way. I smiled at her and she proceeded to come over in my direction to say hello. Apparently she knew who I was, but I did not recall who she was. I just figured maybe she knew my parents. As she approached me she was asking me "How are you? Is this your baby?" (keep in mind at this point, I was holding Brandon and his face was turned away from her). She walked around to take a look at him and immediately gasped quietly and said "Are you going to get that fixed?” I have to tell you, it is probably a good thing that at that particular moment the only word that could come out of my mouth before she walked away was "yes". In usual circumstances, my tongue is quick to make a tactful, yet crisp, reply. In this circumstance though, I was completely dumbfounded and shocked into silence that this woman would actually say that to me. Although her comment was hurtful it taught me a lesson on how to respond to others when they ask (or rudely comment) about Brandon’s condition. I am much more prepared now at how to respond in situations like that. I share this not to put down the woman who made this hurtful comment, but to bring awareness to others that words can hurt despite how much you have accepted something. The world can be very cruel sometimes and all I can do is teach my kids to accept people regardless of their differences.

Special Photo Shoot

2010-04-08T17:24:00.001-07:00

Set up this photo shoot with an old friend. She is an amazing photographer and wonderful with the kids. Check her out at http://www.keenerphotography.blogspot.com/

Easter...2010

2010-04-04T05:57:00.001-07:00

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish, but have eternal life."

John 3:16

Happy Easter Everyone!

Happy Birthday Brandon! "2"

2010-03-04T04:55:00.000-08:00

It's hard to believe that my sweet baby boy has turned two years old today. I am amazed at how much joy this special little guy has brought into my life. He continues to surprise me day to day.

Now 24 months old, Brandon weighs 24 pounds and is 31 inches tall. He is wearing size 3 diapers, size 4 shoes, and size 12-18 month clothes. He is saying more and more words everyday. Although many of his words are not pronounced correctly, or he is missing the first or the last parts of words, I am so proud of him for making such an effort. His goal was to have 50+ words by two years of age and he is progressing well.

Brandon...arriving to daycare...

Enjoying some fun on his birthday at Playland...

The best part...making a wish and eating some sweets...yum!

Seeking Support

2010-01-14T11:30:00.000-08:00

I have had the good fortune of being linked to some amazing professionals, all of whom have helped guide me through this journey with Brandon. I am forever grateful to all of these professionals, but one in particular has touched my heart deeply. She is a therapist working in the mental health field, but she is also dear friend of mine; so I have had the benefit of sharing my feelings and experiences with a friend, and have undoubtedly benefited from her knowledge as a therapist. Talking with a counselor or therapist has many advantages, so you should never be ashamed to seek out those services if you feel you need them.
I would like to take this opportunity to introduce Raquel Wilson, MSW, LISW-S to you all. I have asked her to write a post for this blog sharing her perspective as a mental health professional. Raquel has graciously agreed to do so, and has shared the following message below:

So, here you are. Maybe you’re standing in your bathroom or maybe, you find yourself in your doctor’s office. Regardless of where, when or how, you now find yourself with a positive pregnancy test. For some, it’s a planned and predicted test result. For others, maybe it’s a welcomed surprise. Nonetheless, the moment the results of that test read “Pregnant”, your life changes. For some, thoughts of nursery colors, frilly dresses, and baby names instantaneously begin to occupy the bulk of your brain activity and conversations. For others, a positive pregnancy test has you running straight to the bookstore to pick up the latest edition of “What to Expect When Expecting”. No matter how you look at it, change is inevitable. Change, is the one thing that is certain when it comes to pregnancy. Physical changes win the title of “Most Certain” (and maybe, for women, these are the toughest changes to accept). However, emotional changes (and not just hormonally induced ones) may be a close second. Once that pregnancy test comes back positive, the long list of “real life” responsibilities starts to cloud your mind. “Will I be able to provide for all of my child's needs?” “How will I pay for day care?” “What kind of disciplinarian will I be (or better yet, will my spouse and I agree on discipline)?” There is no doubt that being responsible for parenting a human being is one of the biggest undertakings of a person’s life.
You want things to be perfect, so you follow the doctor’s orders, eat healthy, take vitamins and try to stay educated on the never ending lists of “do’s and don’ts” related to pregnancy. But what happens when things do not go as planned? Some people are affected by physical ailments early into their pregnancy that indicate something may be wrong with the baby. For others, the news comes after an ultra-sound detects an abnormality. And, maybe, it’s not until after your baby is born that you and the doctor realize that there is something wrong. The idea of “perfection” can come crashing down in an instant.
When Amy asked me to write a post for her blog, providing my insight as a mental health therapist, I jumped at the opportunity. It’s hard not to be inspired to contribute to such a wonderful project. I love that in http://www.btbalittleblessing.blogspot.com/, Amy has graciously allowed us a glimpse into her life and the life of her son, Brandon. As her post “Finding Out: A Mother’s Perspective” documents, at her 20 week ultrasound, Amy’s doctor revealed that possible abnormality had been detected, and four weeks later it was confirmed that Brandon was going to be born with a bilateral cleft lip and cleft palate. Now, at just 22 months old, Brandon has endured three surgeries, countless medical tests and has befriended almost every specialist in the Toledo area with his many doctors’ appointments. Amy says that her blog was started so that she could share Brandon’s journey, however, Amy’s journey as a mother undoubtedly seeps through each post. Some posts educate us on all the practical matters involved in Brandon’s care, such as which sippy cups work the best, but Amy also highlights the intense emotions, such as shock, guilt and sadness, that she felt when her idea of perfection came crashing down. In one post, Amy talks about a conversation she had with one of the nurses shortly after Brandon’s birth:
I know now that it was not something I did wrong, or something that happened to me. Brandon was the one who was going to have to go through the pain of surgeries, etc... He knows no different. He is innocent, and is a child that needs love like any other. I believe now that God chose me to be his mom, because he knew that I could give him all of the love and care he needed...I love him unconditionally.
I am sure if you were to ask Amy if the acceptance she came to, as described in the excerpt above, was a quick and painless journey, she would tell you, “Absolutely not!”. For parents, especially mother’s, it can be difficult to not blame yourself when your baby isn’t born “perfect”. Certainly, all parents hope for a healthy pregnancy and baby, but what is a parent to do when that does not happen? In addition to shock, guilt and sadness, a parent can be overcome by grief when they find out that there is something wrong with their child. Often times, we think of grief only in its relation to death. However, the true meaning of grief, as defined by Webster’s Dictionary is:
Keen mental suffering or distress over affliction or loss; sharp sorrow; painful regret.
I think it’s safe to say that finding out that there is an abnormality in your pregnancy or that your child has a health problem constitutes as, and justifies, “keen mental suffering or distress”. Labeling a negative feeling is sometimes the first step to resolving that feeling. Allowing yourself to feel grief after learning of such news and knowing what you are feeling is “ok” or “normal” can put you on a path of healing rather than a path paved with only denial, hopelessness, guilt and anger.
Sometimes labeling and allowing yourself to feel the magnitude of a feeling such as grief, is enough to ensure resolution. However, sometimes it’s not that simple and you need to take different steps in order to begin to heal. Having a support system around you is essential in times of grief. The value of calling on your family and friends for emotional and physical support cannot be measured. However, this can be a difficult step for some, as you may feel that you have no one to call on or the people in your life might criticize you for expressing your true feelings. Grief associated with complications in pregnancy or health problems in children can sometimes feel like an isolative journey, especially to mother’s. Some parents I have worked with in therapy have told me that they have purposefully kept their feelings to themselves for fear of looking “weak”, fear of offending their spouse or because they had an intense need to “stay strong” for the rest of the family. However, these same clients have told me of how this tactic backfired on them and the feelings they tried so hard to suppress ended up coming out in the form of arguments and have created emotional distance between them and their family members. So, even though it is hard, I would encourage you to utilize your support systems such as family members, friends, colleagues or your church community. Reaching out to communities on the internet, such as support groups and blogs, can be a positive way to share your grief as well.
Another strategy that may help to resolve symptoms associate with grief, such as depression, anxiety and increased levels of stress is to continue or start a healthy diet. Participating in safe forms of exercise (if it’s ok with your doctor) is also a great way to cope. Both of these steps can help to restore “happy” chemicals in the body, such as serotonin and norepinephrine, which can combat symptoms associated with grief. For others, prayer may be the leading source of comfort and release. Choosing strategies to cope with grief is not a “one size fits all” scenario. What works for one, may not work for another. Keep in mind that you may need to incorporate a combination of strategies in order to find which methods of coping and healing are most beneficial for you.
If the above mentioned strategies are just not enough to overcome your grief, seeking professional help may be the next appropriate step. Going to see a professional counselor may allow you to share your feelings in a safe, supportive and unbiased environment. A professional familiar with treating grief and associated symptoms may be able to help you identify ways in which you can effectively cope with your grief and take back control of your emotional and mental health. Going to see a professional counselor does not mean you are “crazy”, “weak” or that there is something “wrong” with you. Sometimes, short-term talk therapy can be enough for a person to resolve their grief and learn skills they may need to combat negative feelings in the future. For others, long-term therapy or talking to a doctor about medications such as anti-depressants might be exactly what they need. Whatever the case, allow yourself to seek the help you need, so that you can begin to heal, resolve your grief and get back to being the parent, spouse and friend you were meant to be.
Raquel Wilson, MSW, LISW-S is a Clinical Therapist at Wellspring Counseling Services in Toledo, Ohio. She specializes in individual and family therapy with children, teens and adults working on issues such as grief and loss, depression and anxiety. More information can be found at www.counselingatwellspring.com

Happy New Year..."2010"

2010-01-01T18:46:00.001-08:00

Brandon is nearly 22 months old now and 22 pounds. We are looking forward to what this year will bring. As far as we know Brandon should be surgery free this year.

We will continue to see our wonderful pediatrician on a regular basis. Tis the season for colds, flu, etc... Brandon is actually trying to get over pneumonia right now. Sickness seems to hit him pretty hard, but he is a tough little guy.

We will also continue to be involved with Help Me Grow which has been very helpful. Our early intervention worker comes to the house for home visits to see how Brandon is progressing. She is even bringing a speech therapist and occupational therapist here and there to evaluate Brandon as well.

Brandon will also be following up with his endocrinologist for his growth hormone deficiency. He is growing taller each day with the help of his growth hormone shots, however he is not gaining weight as fast as we thought. He is doing fabulous with his shots and even rolls over into position on his own when he sees us coming towards him with the supplies. No tears, he just says "All done" in his own little way when we are finished. Such a good boy!

Also on the agenda this year is our scheduled follow ups with his opthamologist, Dr. Delmonte at U of M, his geneticist Dr. Hoo at St. V's, his urologist, Dr. Liu at St. Vs, and his orthopedist, Dr. Buerke at Toledo Hospital. As you can see, Brandon has a very busy social calendar. :o)

Merry Christmas

2009-12-25T13:24:00.000-08:00

Christmas 2009. What a year. Brandon is doing fantastic. He is growing a little more every day. He continues on his growth hormone medication nightly. All follow up appointments have been going well...and no more surgeries for awhile.
We are so blessed.

A blankie for you...

2009-12-21T13:50:00.000-08:00

So...last year I bought some cleft bears from the cleft foundation and gave them to our pediatrician's office so they could pass them on to new parents of cleft babies. Although I have changed the gift this year, the tradition continues. This year I decided to make little blankies for our new little friends. I couldn't have accomplished this goal without the help of my family and friends. I delivered the blankies to the cleft clinic today to be distributed as they see fit.

My dear friend Raquel wrote this amazing poem which I attached to each blankie.

This blankie was made with caring hands

By a family who may just understand

The tears and pain, the disbelief

The days and nights where you just weep

Although our stories may differ some

Please rest assured relief will come

A long road for some, and short for others

A common bond amongst fathers and mothers

So to your precious one, we give this gift

Their spirits we do hope it lifts

It's soft and warm and just the right size

To hold or wrap both day and night

Written by- Raquel Wilson

Spreading the word...

2009-12-18T10:15:00.000-08:00

I'd like to give a special shout out to Allison. Allison is an 8th grader here in Toledo who took the opportunity to acknowledge Brandon's journey in one of her school assignments. Allison was to pick a story and make a book out of it. She researched Brandon's blog and information about his medical conditions, made it into a little book, and shared it with her class. I have the pleasure now of having this book as a memento and am pleased to share that Allison received an A+ on this project. "Way to go Allison... and thanks for taking the time to share this information with the younger population!"

On another positive note...I have had the pleasure of being interviewed for an article in the Toledo Free Press a couple weeks ago. This article was published in the parenting section of this newspaper about my blog. I am so pleased to share Brandon's journey and hopeful that we can touch the lives of other families in the process.

Giving Thanks

2009-12-01T15:46:00.000-08:00

What am I thankful for this year? Here is a list just to name a few...
1.)I am thankful for all of the support and encouragement I have received from family and friends during all the ups and downs these past couple of years.
2.)I am thankful for my husband and my wonderful children who make me smile and fill my heart with joy.
3.)I am thankful for having such a reliable and understanding daycare that allows me to feel comfortable leaving my little Bubba so I can work.
4.)I am thankful that my husband and I both have jobs.
5.)I am thankful that our family has health care insurance to aide in our many medical expenses.
6.)I am thankful for all of the compassionate, wonderful doctors and medical staff working with Brandon.
7.)I am thankful that Brandon is recovering so well from all of his surgical procedures.
8.)I am thankful that Brandon can eat "normal" food now and was able to enjoy a traditional Thanksgiving dinner this year.

The list could go on and on, but I wanted to touch on a just a few things. I realize how fortunate I am to have all of the blessings listed above. Despite difficulties we might face day to day, many people out there have it so much worse. When I found out that Brandon was going to be born with a cleft lip I was devastated at first; but as you can see by reading this blog he is doing amazing. Many children out there, especially kids in foreign countries, do not have the luxury of having surgeries to repair their deformities. These children are often outcasts in their villages. I feel so blessed for what we have been able to provide for Brandon.
At Thanksgiving dinner this year my family; including my parents, siblings, sibling's spouses, and I, decided that instead of giving material gifts to each other this year, (with the exception of the kids) we would take the money and donate to a charity (i.e. operation smiles or smile train) to provide at least two cleft repair surgeries to kids in need. Our hope is to bless another child as we have been blessed...it's just a start, but every little bit helps.

Halloween 2009

2009-10-31T20:12:00.001-07:00

Went trick or treating with my sister and my two cousins. We had a great time. I am enjoying my independence as I am more and more mobile. My visits with Help Me Grow have been very helpful so far. My Help Me Grow workers have been very nice and I enjoy playing with them. They have a really cool bag of toys that they brought over to my house to let me play with. Soon they will be sending a speech therapist out to my house to give me some help too. I am starting to say more and more words, but need a little help with my articulation. Next week I journey up to U of M again to have my eyes looked at. Momma is a little worried that they are going to say I have to have another surgery...we'll see. I am making progress with my growth thanks to my growth hormone shots. My mom is starting to notice I am getting taller because my pants are all getting too short. Right now I am just loving life...no big complaints. Although, I have more teeth coming in and that is not fun, not fun at all.

The group: My sister as Cat in the Hat, myself as Thing 1, my cousin Logan as Thing 2, and my cousin Gabrielle as the pink fish.

19 Month Update

2009-10-04T14:00:00.001-07:00

We finally took advantage of the referral to Help Me Grow. I felt I was already well linked in the community so I declined services through Help Me Grow at first, but after hearing more about the services they offer we have decided to give it a try. Any child with a qualifying medical diagnosis can receive free services through Help Me Grow until the age of 3. This is a state funded service. So far I have just met with the intake person, but soon will have a service coordinator assigned to us. Help Me Grow has several early intervention specialists who do home visits to monitor growth and development. More updates to come as we journey forward.

We are starting to see some results from the Growth Hormone shots. Brandon is getting taller and has finally hit the 20 pound mark. I don't think I notice his growth as much since I am around him all the time, but extended family members and friends are the first to remark. He is doing so well. No tears or fussing from the injections. Brandon knows when it's time for his nightly shot and just lays on his belly and waits for it. We have found that the back of his hip area is the least painful for him. Such a little trooper.

Within the last couple weeks Brandon has made remarkable progress with his speech. Several words may not sound "correct", but he is making an attempt and we tend to know what he is trying to say. Some examples of words he is saying...Momma, ga-ga = Da Da, Awna = Breanna, ile = Kyle, ball, gog =dog, elly = belly, uh-oh, no, owww = ouch, mine, bye, hi, bubba, more, and bite.

Cleft Clinic

2009-09-09T15:55:00.000-07:00

Brandon just got released a few days ago from the hospital after recovering from a nasty virus. Given his medical history, acute illnesses sometimes affect him worse than it would other kids. He is now doing much better and ready to move forward.

Today we had a follow up appointment at the Cleft Clinic. Cleft Clinic is where a team of professionals come together to evaluate various kids in different stages of their cleft repairs. The cleft team consists of a speech therapist, plastic surgeon, oral surgeon, genetic counselor, ENT physician (Ear, Nose and Throat), and a BCMH nurse (Bureau for Children with Medical Handicaps).

The speech therapist talks to you about feeding issues, speech development, etc... So far Brandon is doing well. Even though his speech is not clear, he is trying to communicate appropriately. The speech therapist tells me this is excellent. His receptive language is right on target; and as he turns three or four years of age, we will work more on his expressive language by getting him into speech therapy.

The plastic surgeon evaluates the various types of clefts and talks to you about when he feels your child will be ready for the different stages of surgery that they must endure to repair their cleft lip/palate. Today we were told that Brandon is doing fantastic and at this point he can be reassessed in one year.

The oral surgeon is there to discuss dental development and they are also involved with performing surgery around the age of 7-10. At this point Brandon's jaw/palate is in three pieces instead of one solid piece. Around the age of 7-10 they will do a bone graph where they take some of the "spongy" bone out of his hip and implant it in the crevices of his palate that still need fused together. Today the oral surgeon told me that the recovery for this is usually 2-3 months for his mouth. During that time he will have to have a soft diet - no biting allowed. It will also take approximately 6 weeks for his hip to heal, and he will have to refrain from any sports, stairs, or strenuous activity during that time until his hip is fully healed.

A genetic counselor is available to follow up with any questions from a genetic standpoint. Some children with clefts have an associated syndrome. A genetic counselor can link you with a Genetisist for further testing and evaluation if indicated.

The ENT doctor is on board as well. Many kids with cleft palates are more prone to getting frequent ear infections. They generally coordinate putting tubes in their ears when a child is having another surgery to help reduce ear infections until the palate is fully closed. Brandon already had his ear tubes put in as mentioned before when he was 9 months old.

Last but not least is the BCMH nurse. She is there to help enroll your child for assistance through the Bureau for Children with Medical Handicaps. Kids with clefts (and other diagnoses)qualify for this assistance for diagnostic purposes, which usually helps with medical bills for a few months while getting diagnostic testing done. After that it is the parents responsibility to apply for financial coverage through BCMH to include treatment. So far I haven't had much luck with getting coverage for his treatment. Brandon has gotten BCMH assistance a few times for diagnostic services, but it never carries over for treatment. Apparently, due to our income we haven't qualified for extra coverage, but I am in the process of reapplying due to added medical costs which include Brandon's growth hormone injections. I have been struggling with our governments healthcare system for some time. My child can have the same diagnosis as another child. That child's parent(s) may not work and therefore they would qualify for assistance. Then there are families like mine where both parents work and you rack up tons of medical bills, but are told you don't qualify for extra help because you make too much. These medications, surgeries, and treatments still do not come cheap and even working parents can struggle sometimes.

Overall, we had a good visit today. No more surgeries on the horizon for some time. Next stop is Brandon's 18 month well check in two weeks and then off to U of M to see the opthamologist again.

Starting the Growth Hormone Shots

2009-08-17T17:16:00.001-07:00

So we met with Brandon's endocrinologist to review all of the testing. He stated Brandon was a good candidate for starting Growth Hormone Injections. This medication is very costly and some insurances will not cover this treatment at all. We are fortunate to have an insurance provider that will cover 80% of the cost, but our 20% portion is still rather large. I recommend anyone who has children who are in need of growth hormone therapy to contact the drug company who makes the product your physician recommends. Even though insurance is paying 80%, I called the drug company and applied for patient assistance. We qualified for $125 per month towards are cost which helps tremendously.
He is supposed to get one shot every night. This will continue most likely until he is a teenager and he has hit an appropriate height and weight for his age. I'm not thrilled about having to give him a shot every night, but I also realize he needs this, and it will help him in the long run.

This is Brandon before starting his growth hormone shots...Age: 17 1/2 months, Weight: 19 pounds, Height: 28 1/4 inches. He is currently plotting below 0% on the growth chart for his age.

So...Daddy gave Brandon's first injection while I held his leg. I have to say, Brandon did extremely well. He "whimpered" a few seconds and then stopped as I held him and gave him his nightly cup of milk.

This is him a few minutes afterwards...doing very well as you can see.

Day number two - I gave him his injection this time while his dad held his leg in place. As a nurse I have given many shots and I thought to myself "Piece of cake...I can do this". Medically I know how to give injections properly and it's never bothered me before to poke someone, but as a mom feeling the needle poke through my babies skin made me feel horrible inside...I was thinking to myself "What have I just done to him?" It all went well and I know this is just something that has to be done. Afterwards...again...just a slight whimper from him for a few seconds; and then I held him, gave him his milk, and all was well. He is doing fantastic.

2009-07-28T06:20:00.000-07:00

I have received some amazing feedback since posting this blog on various cleft websites. A couple mothers who were inspired by my story have shared with me that they just found out at their 20 week ultrasound that their child will be born with a cleft as well. Both of these moms have had other children with no problems, so I can relate with how much of a shock this is to them. Having a child with special needs can affect the whole family, and it is important to prepare any siblings as well as yourself. Unfortunately we live in a cruel world sometimes. Preparing your children will be the start of a life long lesson for them. In this post I wanted to share how we prepared our older children for Brandon's birth, and how they reacted.
It wasn't until my husband and I had come to terms with the news ourselves that we were comfortable sharing the details with our other children. I think as a parent it was important for me to go through the process of shock, denial, anger, etc... followed by acceptance and peace before I shared the news with my kids. I did not want my initial emotions to transfer to them.

My step-son, Kyle, is currently 9 years old and my daughter, Breanna, is 6 years old. A few weeks prior to delivering Brandon, my husband and I explained to the kids that their little brother was going to be born with a "boo-boo". We wanted to put it in terms that they would understand. The first things they asked were "Where?" and "What happened?". We explained that his mouth and nose area would look "different" than other babies, but it would not hurt. We also explained to them that eventually the doctor's would fix his "boo-boo", but not until he got a little bigger and stronger. Afterwards we told them "sometimes things like this just happen", and then reassured them that it would all be okay.

My step-son Kyle doesn't spend as much time with Brandon as Breanna does since he does not live with us full time, but he has accepted Brandon just as he did his sister when she was born. They have a very cool relationship.

I remember my daughter's first glimpse at Brandon in the hospital right after he was born. Breanna had a smile on her face, but a slight hint of fear in her eyes; fear that she might "hurt" her brother, but never scared of what he looked like. She instantly bonded with him and even to this day looks out for him. The first time I took Brandon to her daycare to visit and meet the daycare workers Breanna was so excited that she was going to get to show her friends her baby brother. Kids are so innocent and amazing, and don't seem to be affected by certain things that adults might struggle with. Breanna was so proud to show off Brandon. Although some kids had some questions, they were all very kind.

Breanna was a little emotional after Brandon's first surgery. She spent the day with a friend at the zoo and was so worried about her little brother that she wanted to come home early. She picked out a special little elephant stuffed animal at the zoo to give him. The second she came home and saw him, she gently stroked her hand back and forth on his head saying, "Don't worry, sissy is here".

The kids have been amazing with Brandon. This whole experience has brought us all closer as a family. The kids just see Brandon as their little brother. The fact that he was born with a birth defect does not change the way they love him or interact with him.

Medical update

2009-07-19T19:19:00.000-07:00

Since his last surgery, we have had further testing done regarding Brandon's growth. As it turns out, he has a Growth Hormone Deficiency. We meet with his endocrinologist soon to discuss more of the details, but it is likely he will be starting growth hormone injections in the near future. This means we will have to give him nightly injections...sorry little guy. Some kids receive these shots up until the age of 18.

Life after surgery

2009-07-19T18:12:00.000-07:00

Easter 2009. No more surgeries for a couple years...at least we think so.

Lovin' life, even when my mom makes me wear silly things.

I am now walking.

Getting ready to go on my first airplane ride. Since I had such a rough year, I get to go to Disney World.

What else can I play with in the hotel room?

My only picture with Disney characters before the rain came.

Little sport.

16 months old. This is me...as laid back as they come.

3rd Surgery: Palate repair

2009-07-19T17:53:00.000-07:00

March 30th, 2009. Getting ready for surgery...again.

I was pretty entertaining.

The hospital let me play in their wagon to pass time.

Getting tired of waiting.

Mommy holding me after surgery. I was bleeding a lot. I didn't like when the nurses had to suction me.

Tube feeding post op. No bottles allowed again, only tube feeding for 10 days. The doctor said if it can't fit through the tube then I can't have it. I drank a lot of Pediasure. This was one way for mommy to break me from the bottle. After 10 days of this, mommy made me use sippy cups. (Nuby and Munchkin brand sippy cups with the clear silicone tops were the easiest for me to

use. I'm still not good at sucking)

Very disappointed that I had to have the arm splints on again for 10 days.

The doctor also required me to sleep on an incline or elevated in my car seat.

Waiting to get discharged from the hospital. I spent a day and a half here this time.

(No matter how many surgeries I watch him go through, it never gets easier. I get better and better at packing for the hospital, finding ways to distract myself as I wait for the surgeon to come out and say "Everything went very well", and get used to sleeping in uncomfortable positions on the hard pull out sofas or upright in a rocking chair; but I hate watching my little bubbie go through this. As he gets older and more aware, it gets harder and harder.)

My First Birthday!

2009-07-19T13:52:00.000-07:00

I'm one years old today.

My birthday party...celebrating a special year with friends and family.
I accomplished a whole lot in one year.

My personal cake. Mommy convinced the surgeon to hold off on my next surgery until after my party so I could enjoy my cake.

Making a wish...

Misc. Pictures

2009-07-19T13:41:00.001-07:00

Christmas 2008. A couple weeks after surgery. So glad to have the catheter out.

Had to go to U of M to get my eyes looked at. May have to have surgery on my eye muscles if they don't get stronger on their own.

Getting more mobile...

Valentines day 2009

2nd Surgery: Hypospadius repair and Ear tubes

2009-07-19T13:11:00.000-07:00

December 2008. Getting ready to leave for the hospital. Got my bear from my daycare workers. They made it especially for me.

So tired...just want to get this over with.

Waking up and getting ready to go home. We are so blessed to have such wonderful surgeons caring for Brandon. The entire surgery took a total of 5-6 hours. Waiting is the hardest; and everytime they call you to the nurse's station to give you an update your heart jumps up in your throat because you never know if there is a problem. Luckily, that was not the case. This surgery was much easier than the lip repair. Brandon was discharged with a cathether which had to stay in for about one week. Diaper changing was the most difficult part, but here are some tricks of the trade - Double diaper. Keep one diaper on with a slit cut in the middle to feed the catheter through, then put a larger diaper over that to contain the urine. Some bladder spasms are common post surgery, but they give medication to help reduce those symptoms.

The scars are fading

2009-07-19T12:52:00.000-07:00

Spoon feeding for the first time.

My first Halloween.

Healing more and more everyday.

.
Getting ready for Christmas.
L

A special thanks to Dr. Hunyadi for his wonderful surgical skills. Brandon's lip looks excellent!

Post Op

2009-07-19T11:54:00.001-07:00

One day post op. Sis is so happy to see me.

Brandon's surgeon was amazing. I have never seen such tiny stitches. I cried so hard when I first saw him in the recovery room. His face was so swollen and I was scared he was going to be in a great deal of pain. He was given morphine for the pain, which helped, but morphine has a side effect of decreasing your respirations. His oxygen saturation level dropped so low we ended up having to take turns holding oxygen over his face all night.

Wearing his arm splints. This was a requirement as well for 10 days to prevent him from pulling at the surgical sight. We nicknamed him "Houdini" because he kept finding ways to get his arms out.

One month after surgery. Doing great. It's amazing how fast they heal.

1st Surgery: Lip Repair 7/11/2008

2009-07-19T11:40:00.000-07:00

Each surgeon has their own requirements before they will perform surgery. In Brandon's case, he had to be at least 3 months old, 10 pounds, and have a good hemoglobin.
Brandon is four months old here...we had to wait until he gained enough weight.

Morning of Brandon's first surgery. He was doing very well playing before we left the house at 5:30AM, considering he was not allowed to have anything to eat or drink after midnight.

Just waiting for the doctors to get this show on the road.

Tube feeding after surgery. No bottles were allowed. We had to put his formula in a syringe and tube feed him for 10 days until he was healed.

Only spent one night in the hospital and then he was released to go home the following morning since he was feeding so well with the tube.

First Haircut

2009-07-19T11:22:00.000-07:00

I was two months old for my first haircut...mommy had to
Amanda to cut my hair at this age.

Much better!

My 1st admission to the hospital

2009-07-19T11:10:00.000-07:00

I started daycare when I was seven weeks old; mommy had to go back to work. I wasn't scared. Mommy had taken me to the daycare to meet my teachers a couple times before I started. She also taught them how to feed me with my special bottle...they did a great job. I started not to feel very good by the end of the week. The doctor said I had to go to the hospital. I was there for four days. They had to poke me five times to get my IV in since I was dehydrated. Worse thing though...I had to get a spinal tap. It's a good thing they didn't let mommy watch. As it turned out I had viral meningitis...that's pretty much the same thing as an adult getting a severe cold (If you did a spinal tap on an adult who was sick with a severe cold it would show white blood cells in the spinal fluid as well), but I'm so little so they had to watch me closely.

Some pre surgery pictures

2009-07-19T11:06:00.001-07:00

So happy...and look at all that hair!

Welcoming Brandon Thomas Burditt

2009-07-19T10:14:00.000-07:00

March 4th, 2008.

Weight: 6lb, 4oz Length: 18 3/4".

So precious...Still feeling a little nervous, but feeling extremely blessed that he was healthy. We found out he not only had a cleft lip and palate, but was also born with a hypospadius (a birth defect of the urethra in males)as well. Urology to get involved down the road to discuss surgery.

Overall, doing well. Teaching him to use his special needs feeder to eat which was time consuming, but at least he was eating, so they let us go home after a couple days.

Before leaving the hospital a staff member shared a touching personal story with me. I know now that it was not something I did wrong, or something that happened to me. Brandon was the one who was going to have to go through the pain of surgeries, etc... He knows no different. He is innocent, and is a child that needs loved like any other. I believe now that God chose me to be his mom, because he knew that I could give him all of the love and care he needed...I love him unconditionally.

Finding out: A Mother's Perspective

2009-07-19T07:43:00.000-07:00

I remember going in for my 20 week ultrasound. I was so excited to find out if I was having a boy or a girl. My midwives told me that so far all of my labs and vital signs were picture perfect for a pregnancy. Then it happened...I saw the ultrasound tech's face turn serious. She kept taking more and more pictures of my son's face, but wasn't saying anything. With my medical background I knew the possibilities; I finally came out and asked..."What's wrong?","Is there a cleft?". The ultrasound techs aren't allowed to really say anything until it is confirmed by a doctor, but she did say she wasn't sure. Tears began to roll down my face, but I was trying to stay strong. My daughter was with me and I didn't want her to be scared. More and more pictures were taken. I was then asked to wait 4 weeks before I came back to get another ultrasound. This would allow my baby more time to grow and then confirm what they thought...my baby was going to have a cleft lip and palate. I was devastated, but there was nothing I could do. I searched online for any information and pictures I could find to satisfy my desire to learn more. I had no family history of this birth defect. I was referred to a high risk doctor for further evaluation...from there my world began to fall apart. The more and more they checked my baby inside my womb, other concerns began to develop. As it turned out, my little boy was not measuring "normally" and the doctor was worried about a form of skeletal dysplasia, specifically - achondroplasia. For those of you who don't know, this is the most common type of dwarfism. They sent me to a neonatologist to learn more about different types of skeletal dysplasia. Some skelatal dysplasias are lethal, but most have a good prognosis. This was the point when I opted for an amniocentesis to rule out a diagnosis of achondroplasia or chromosomal defect. I felt I needed to do this to prepare myself for what was to come. I had hit my ultimate low...what was wrong with my baby growing inside of me...would I finally have him and lose him all too soon...what did I do wrong...why is this happening to me? Many more weeks of anxiety and anticipation...and then the amnio results came in. Everything was normal!...(Sigh of relief). Still feeling nervous, not sure how my baby will look or what the severity of the cleft will be, but am definitely more hopeful at this point.