Signs Your Child May Have Cerebral Palsy

Since cerebral palsy is most often diagnosed in the first several years of life, when a child is too young to effectively communicate his or her symptoms, signs are the primary method of recognizing the likelihood of cerebral palsy. Cerebral palsy is a neurological condition which primarily causes orthopedic impairment. 

Cerebral palsy is caused by a brain injury or brain abnormality that interferes with the brain cells responsible for controlling muscle tone, strength, and coordination. 

 The eight clinical signs of cerebral palsy involve:

 • Muscle Tone

 • Movement Coordination and Control

 • Reflexes

 • Posture

 • Balance

 • Fine Motor Function

 • Gross Motor Function 

• Oral Motor Dysfunction 

 I noticed that Elizabeth had very tight muscle tone and her gross and fine motor function on her left side was different from her right side. I noticed this when she was about 5-6 months old. 

Her doctors at Kennedy Krieger diagnosed her with a neuromotor abnormality but after an updated MRI and a visit with her neurosurgeon at Johns Hopkins it was decided that she did have CP. If any parents have any questions about her CP, please feel free to ask. I am happy to discuss what we have been through so far.

  I found the above info from CerebralPalsy.org #CPorgInformation

Happy Thanksgiving!

Today is the girls first real Thanksgiving. Last year they were in the NICU and my husband and I ate Thanksgiving at the Ronald McDonald House. It was a wonderful meal, but nothing beats being home with your family. 

This year I am thankful for my two beautiful girls. They are so strong and they amaze me every day. I am also thankful for my husband who has supported me during this hard year. And finally I am thankful for my family for all of their hard work and support with the girls.  I got a few amazing friends out there too... you know who you are. :) 

We are truly blessed! 

Premature birth rate continues to drop

I recently read the below data. I found it very interesting. 

Premature birth rate continues to drop but is still the highest among other nations. According to a report by the March of Dimes, the preterm birth rate in the United Stated fell for a sixth consecutive year in 2012. 

Premature birth can lead to many serious health complications including developmental delay and cerebral palsy. 

Since 2006, about 176,000 fewer premature babies have been born in the United States.  However, even though last year's U.S. preterm birth rate was the lowest since 1998, the nation again earned a "C" on the March of Dimes report card. 

"Although we have made great progress in reducing our nation's preterm birth rate from historic highs, the U.S. still has the highest rate of preterm birth of any industrialized country. We must continue to invest in premature birth prevention because every baby deserves a healthy start in life," said Dr. Jennifer Howse, president of the March of Dimes.

 

I found the above info from CerebralPalsy.org #CPorgInformation

Map is from the march of Dimes website. Search Report Card Data

Interesting Data

A new study published in the journal Pediatric Research shows that boys are 14 percent more likely to be born premature than girls and are at a greater risk of developing a disability. "One partial explanation for more preterm births among boys is that women pregnant with a boy are more likely to have placental problems, pre-eclampsia, and high blood pressure," conditions which are all associated with preterm births, said the research team leader Dr. Joy Lawn. For the study, the researchers analyzed data from more than 15 million preterm babies worldwide. Of the 13 million who survived beyond the first month of life, 4.4 percent had mild disability and 2.7 percent had moderate or severe disability. 

 Info taken from CerebralPalsy.org #CPorgResearch

And now some cute pics of my girls...

RSV Info

The girls had their first RSV vaccine last week. They will be getting it each month until March. Abigail got her shot first and immediately cried her little eyes out. Elizabeth started to cry because Abigail was crying, so Elizabeth actually cried during her shot and cried even more after her shot was over. And to think...4 more to go! 

Abigail was approved by our health insurance right away for the RSV vaccine, but I had to do some fighting for Elizabeth to get it.  Insurance companies do not like to pay for it because it's over $1,000 per shot.  Elizabeth was originally denied the RSV vaccine, but after several phone calls and  going through the appeals process she was finally approved.

The girls remain on lockdown until flu and RSV season is over. The only places they are allowed to go to is doctors appointments and to their therapy appointments. The girls physical and occupational therapist actually wear face masks when they work with them to be safe. Despite being very careful my girls have already had a cold and an ear infection and had to be on antibiotics for 10 days last month. This is going to be a long cold and flu season, but we gotta do what we gotta do. 

Check out the poster I found the other day. It has some really great info on  it and  it explains why preemies are at such a risk. 

Health Insurance and Early Intervention

As I previously mentioned I attended a preemie conference last Sunday. I learned a lot of information about reaching developmental milestones and taking advantage of therapies, but one thing that I liked most of all was speaking to other parents. It was comforting to know that I was not alone and there are other parents out there learning to take care of preemies just like me. 

I spoke to one mom and it made me realize how well my girls are doing and how lucky I am to have the job I do with the wonderful health benefits I receive.  The mom I spoke to told me about her twins who are currently 20 months old. One of her twins has CP like Liz. He is 20 months old and is just now learning to crawl. She told me that her insurance will only cover 26 visits a year. If you do the math, that is only 2 therapy visits a month. My heart hurts for this mom. She was clearly trying to do and learn anything she could to help her children, but insurance has caused a road block.  

Since Elizabeth is diagnosed with CP my insurance plan has NO limit on the amount of therapy sessions she can receive. When I think about how far my girls have come I know a lot of it is because of all the OT/PT therapy they receive and all that I have learned to do with the girls at home from their therapists. 

The conversation with the mom made me realize how much this country needs healthcare reform. That 20 month year old preemie should be able to receive all the therapy he needs in order to have the best chance possible to move and control his body like he needs and wants to. 

During the conference the doctors and therapist stressed over and over the importance of early intervention.  I encourage new preemie moms out there to start therapy as soon as possible! I known it works. Abigail and Elizabeth are reaching milestones daily. They may still be a little behind, but I know it would be way worse without the interventions we have received so far. 

Abigail's Sleep Study Take 2

I spoke to Abigail's Pulmonologist and it turns out that her sleep study didn't go as well as expected. It wasn't horrible, but it is a small setback. Her doctor who I love by the way, learned some new information about her breathing while she is sleeping.

There are two types of sleep apneas that can occur while you are asleep- Central and Obstructive. She actually had both during her sleep study. 

The doctor told me that it is possible that she will need her tonsils and adenoids out in the future. Her tonsils and adenoids are most likely what caused the few Obstructive apneas that she had. 

Her doctor was most concerned with the central apnea that she has. Each hour of the sleep study she had a few moments where her breathing saturations dropped down to the 89-90 range. The doctor would like her to stay above 92 at the very least. 

The good news is she is very close to where she needs to be, but the bad news is we will have to continue with the oxygen at night. Oh, and the other bad news is she will have to repeat the sleep study in a few months. It is just like anything else...we just got to keep trucking along. 

Abigail showing off her her yoga moves! She is so funny! 

November 17th is World Prematurity Day!

Today is World Prematurity Day! 

Today I thank the nurses and doctors that work hard each day to save babies that were born way too early. You all do amazing work and I thank you from the bottom of my heart! Today I am reminded o the strength of my girls. They both are truly my heroes! 

Better Late Than Never... 1st Birthday Pics

Sorry these are late friends! Enjoy the pictures.

Preemie Parent Conference This Sunday!

This is just a friendly reminder to my fellow NICU/Preemie Parents out there about the upcoming Parent Conference. It is this Sunday.  I will be attending and I hope to see you there. Check out the website for information about the different sessions offered. They also sound pretty interesting. http://www.preemiestoday.org/pages/2013_conference.php

Sleep Study and ABR Test Results

Abigail's sleep study went well. My husband Dan took her Sunday night. The study was at Mt. Washington Pediatric  Hospital in Baltimore. They had to arrive at 8:30 PM and the study was over at about 5:30 AM the next morning. She was hooked up to several leads during the study.  I honesty have no idea how she was able to sleep through all of it. She only woke up once around 2, but was able to go back to sleep. She is such a trooper! 

It is our hope that she will pass her sleep study so she can be off of her oxygen for good. She is currently only using it at night time. The nurse that administered the test said she did great and she thought she didn't need oxygen. Just like with any test we now have to wait around for the results. Hopefully the doctor calls us back with good news. Keep your fingers crossed! I will post the results once we find out more info.

Now on to Elizabeth. Elizabeth had an ABR test done today. It's a brain response test that checks hearing. Elizabeth did not pass her hearing test in the NICU. She has been followed by an Audiologist at Hopkins since her discharge and they have done several test in their office to check on her hearing. Her Audiologist was worried about her hearing in her left ear. The test takes about an hour to complete and you have to be under full anesthesia. 

The results were good. Her hearing in her right ear is normal. Her hearing in her left is a just below the normal range. As I expected her small amount of hearing loss is related to her cerebral palsy on her left side. 

This has been some week and it's only Tuesday! Tomorrow Abigail has an appointment with her pulmonary doctor and Thursday they get their first dose of the RSV vaccine and the flu booster. 

The first pic is of Abigail getting her sleep study and the second pic is of Elizabeth in the recovery room after her ABR test. My little girls are so strong! 

Oh the crazy life of micro preemies! 

Kangaroo Care

This time last year I was looking forward to the time I could do kangaroo care with Abigail and Elizabeth. I would see other moms doing it and I couldn't wait. The kangaroo hold is a safe way for moms to hold their preemie babies. The baby is placed on the chest on direct skin. The baby only wears a diaper so they can feel your skin. It is a wonderful time for a mom to bond with her baby, but it is also beneficial for the baby. The skin-to-skin helps comfort the baby and can even help with stabilizing their heart rate and breathing patterns. Elizabeth was about 3 weeks old before I could hold her and Abigail was about 6. I can still remember the first time I got to do the kangaroo hold with them. I was nervous because they were so small, but it also felt amazing to hold them for the first time.  

I encourage any new preemie/NICU moms to take part in kangaroo care. If is a great way to help you feel connected to your baby and you are giving something special to your baby that only you can give.  At times it can feel like there isn't much you can do for them because the nurses do so much, but kangaroo care is something special you can do.

Holding Elizabeth for the first time

Holding Abigail for the first time 

I recently heard...

In the last few weeks I had two different friends of mine tell me that they have a friend that just had a baby born premature. One of those babies was born at 3 pounds. My heart hurts when I hear these stories because I know what is ahead for those parents. 

I pray for those who are experiencing the life in the NICU. It is a hard road. Just remember to take one day at a time. 

Our Visit to the Orthopedic

This week the girls went to a new doctor. They had an appointment with the orthopedic at Kennedy Kreiger.  Liz will be getting an orthotic for her leg. The orthotic is called an APO. It will help to keep her foot flat because when she stands she points her toes on her left side due to her CP.  She will also continue to wear her hand brace. The doctor also ordered a hip X-ray. He said people with CP have an increased risk of their hip popping out of socket.  Her hip looks great now, but they wanted a baseline for the future. She will get another X-ray of her hip in 6 months. I am taking Liz on Friday to get fitted for her orthotic so more pictures to come.  Abigail looked great. The doctor was impressed that she can grab things with her feet and can bring it up to her hands. Silly girl! She has monkey feet! 

This brings our doctor total to...8 doctors. 

An on a side note the girls RSV vaccine is in so they will be getting that this week.  :) 

One Foot Two Foot...

One of the girls NICU nurses made this cute Halloween card for me when the girls were in the hospital. It was left by Elizabeth's bedside for me to find as a surprise.  The girls were only a few days old when it was done. You can tell how little they were from the size of their feet. 

I made a new picture with their footprints this year to go along with their lady bug themed birthday. 

Check out how big their feet got in one year! Abigail is 4 pounds smaller than Elizabeth, but her feet are just as big. :) 

*Pictures from their birthday party are coming. I am a little behind... sorry friends!