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.