Merry Christmas

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...

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...

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

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

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

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

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

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.

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

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

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

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. We 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 guy go through this. As he gets older and more aware, it gets harder and harder.

My First Birthday!

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

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

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

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!