Healthy and Well

After the girls started to feel better last week I got sick!  Of course.  A high fever, sore throat, etc.  It took me a few days to get my energy back but now we are going strong.  Ryan and I both celebrate our birthdays this week.  Wow, how life has changed in the last few years when it comes to celebrating our life events.  I am sure this is not unusual as you get older and your family grows.  I will say that my husband and friends outdid themselves this year and I had a wonderful birthday celebration for the big 30!  Thank you!

Cate has been doing great with her crawling, IAHP program, and her attitude in general.  I know it helps that the girls have been able to go outside now that the weather is nice.  Cate is crawling 6 feet down the inclined floor in 10 seconds or less about 30 times each day, crawling on the flat (level) floor 1-2 feet about 10 times each day and crawling in the evening and night.  That is a total of 340 feet of crawling each day!  We are so proud of Cate, she works very hard for every inch.

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Dad and his girls enjoying the Ohio river and the ducks.

Charlie admiring the ducks on the Ohio river.

Charlie admiring the ducks on the Ohio river.

 

 

 

 

A Very Determined Girl

We noticed yesterday that Cate was reaching out with her left hand to grab at items.  When I say “reaching out” I mean reaching about 3 inches.  An approvement from last week alone!  Between Cate’s extra tone in her upper body and being blind for the first 9 months of her life with gradual improvement her manual competence has been very much delayed.  We were so excited when she grabbed her spoon in front of her face several weeks ago.

But then today she did this!

Cate got to her toy!

Cate got to her toy!

Cate playing with her ball.

Cate playing with her ball.

It may not look impressive but believe me it is.  I laid Cate down on her stomach (where she spends much of her time, always on her stomach) and this toy was several inches in front of her.  As I was feeding Charlie dinner I heard a little bell ringing.  It took me a second to realize that Cate was making that sound.  She crawled about 6 inches, reached out and grabbed the toy!  There is a small bell inside the toy that rings when you move it around.  She was happy but I don’t think she understood what all of the fuss was about.  I can’t wait to see what she does tomorrow and next week.

Charlie is starting to feel much better.  Here is her Easter picture with Grandpa.  She was a little tired but Cate was mad so no good pictures.

Charlie and Grandpa on Easter 2014.

Charlie and Grandpa on Easter 2014.

My Kids Eat Better Than I Do

Recent trip to the market.

Recent trip to the market.

I went to the grocery store yesterday to get food for the kids (local vegetables are still out of season).  I thought I would share since this is a big part of Cate’s progress on the Institutes program and really good for Charlie as well.  Each meal that the girls eat, currently 5 meals each day, have the following items with a specific ratio of fats, carbohydrates, and protein:

  1. Leafy green vegetable
  2. Non-leafy green vegetable
  3. Non-green vegetable
  4. Protein
  5. Simple and complex carbohydrate
  6. Fat

I buy as much organic and local that is available and avoiding the high allergy foods.  When we first started the girls on this diet, they were 13 months old, it took me about a month to locate the best and most reasonably priced produce and meat.  I purchase the produce from a local farmer at our farmer’s market (when in season), the meat comes from a local farmer who sells by the cut, and the rest comes from the grocery store or online.  Currently the girls eat mostly steamed and blended food because Cate is not yet chewing her food so Ryan and I do not eat the same food, but we should!  The girls love their food!

This is one of my next challenges: cook meals for all of us following the Institutes guidelines.  I know we would feel better and be much healthier.

2 Sick Toddlers

Cate’s fever broke early Saturday morning and then she developed a rash, roseola we assume.  I am not sure how she got it since we hardly leave to do her program and keep her healthy.  Charlie developed the fever Sunday night and it broke Monday morning.  Yesterday was a long day with two sick and fussy toddlers with only one mom to keep them happy.

The best news is that Cate did not have any seizures, even with a temperature up to 102.9 F!  She stopped crawling for a few days and some of her stiffness came back but she was doing better last night.  Hopefully she will get back on track in the next couple of days.

Unfortunately we did not get that beautiful Easter Sunday picture with everyone in their colorful dresses.  We made it to church but with tired parents (lack of sleep from a fussy Cate) and an unhappy Cate who just wanted to go back to bed.  Happy Easter!

Seizures 1

Unfortunately Cate had a fever today.  She has been so healthy for 2.5 weeks so I am pretty disappointed.  It has been a long winter of colds in our house.  So far Charlie is happy and feeling well but tomorrow will tell more.  When Cate is sick she is at a higher risk for seizures, is unable to do most of her program, makes 2 steps back with her progress, and is not her happy and funny self.  I am hoping that she will feel better tomorrow and we can pick up where we left off.

The worst part of Cate getting sick are the seizures.  So today I have been on alert watching Cate closely.  She had her first seizure in March of 2013.  After spending 5 days at the hospital she was diagnosed with infantile spasms and put on a very strong hormonal steroid, ACTH (adrenocorticotropic hormone).  Her seizures slowed down and stopped for a few days but the medicine did not work and she was taken off 4 weeks later.  ACTH is a medication that is very hard on the body and can cause a lot of problems.  We have not put Cate on any other seizure medication.

When Cate had the infantile spasms her entire body would  convulse inward once, would scream, then she would do it again.  The episodes would last anywhere from 2 minutes to 15 minutes with about 2 seizures per minute.  She would have anywhere from 1 to 10 seizure episode per day.  Cate also had a constant hypsarrhythmia (brain disorganization).  She had the infantile spasms daily until July 2013.  When her seizures stopped and her brain started to “organize” itself again is when she started making great progress.  I lost a lot of sleep worrying about my daughter during this time.

The great news is that the seizures stopped!  We went to the Institutes for the Achievement of Human Potential in April of 2013 for the first time and learned a lot.  During this trip we took a 5 day course only for parents.  While we were in the course Cate was at home having more seizures.  We left that week with a plan for Cate and our wonderful advocate at the Institutes helped us from a distance for the next 4 months.  We put Cate on a liquid balance, changed her diet, started the oxygen enrichment program, and prayed.  Cate did not have another seizure for 7 months, she has now had 2 more.  The new seizures are a different type, they are focal seizures.  She had both of them when she was sick.

Please pray that Cate will start feeling better.  I will provide more details next time.

A little about Cate

So much has happened in the past 2 years with our twins, especially with Cate.  I have a hard time knowing where to start when telling her story.  I would like to start by telling you a little about her.

In the first 24 hours of life Cate was intubated, had a chest tube put in, on many different medications, stopped breathing many times, and in an incubator.  However, with all of the things going wrong with her little body she healed.  With the exception of her brain injury she is a very healthy little girl.  For this we are blessed.  We are able to focus on Cate’s brain injury and the symptoms that come along with that.  Cate is a fighter!  She is very strong willed and already knows how to play everyone who comes into our house.  For example, she is placed on an inclined floor (it looks like a slide) to give her the the best opportunity to move.  She learned last week that if she rolls over on her back while on the floor mommy will come and get her.  A win for Cate.  She got mommy to pick her up a few times.  So for the next 2 days that is what she did when I placed her on the inclined floor until she eventually realized that I had figured her out.  She is constantly testing us and winning most of the time.  All of this she does with a big smile on her face.

Cate loves to jump up in the air in your arms.

Cate loves to jump up in the air in your arms.

Below is a current description of Cate’s neurological abilities.  (My engineering style brain likes to use bullet points.)

  • Cate cannot crawl on her belly in a cross pattern without a lot of effort or on her inclined floor.  However, Cate can now crawl on her inclined floor!  Watch the video below.
  • Cate does not speak any words but she does have over 5 meaningful sounds that she uses.  Recently she has started “singing” along with us.
  • Cate can now see some detail, 1 year ago she was completely blind.  But she does not have any divergence (her eyes do not work together).  She can read over 250 words and is learning more everyday!  I will post about the reading program in a future blog.
  • Cate has extra tone in her upper body and her hips.  She used to hold her hands in a fist with her thumbs tucked under her fingers, her hands were always up by her ears with her elbows out, and it was almost impossible to straighten her arms even to clean the inside of her elbows.  Now her hands are open, she holds her arms with her elbows at her side or completely relaxed, and she loves to play “patty cake”.
  • Cate has just started reaching for items if they are very close to her hands and face.  She is able to hold an item in her hand and release it when she is ready.
  • Cate does not support her head when you are holding her most of the time but now she can hold up her head when she lays on her stomach.  She will hold her head up and push up on her arms for 5 minutes or more at one time.  She used to lay there barely able to move her head from one side to the other.
  • Cate has had 2 seizures in the past 9 months, focal seizures when she was sick.  Previously she had multiple seizures each day, infantile spasms.  She is not on any seizure medication.
  • Cate used to be very sensitive to textures and temperatures on her skin, her tactile ability.  Now Cate is happy with almost all textures and reasonable temperatures.  She does not like to be hot though.
  • Cate will eat her food sitting in a high chair in the proper sitting position without screaming.  This is a big improvement from 6 months ago when you had to hold her while she laid on her back and screamed.  She does not like to be in the sitting position due to her extra tone so the car seat is always a challenge.  Now she can ride in the car for up to 45 minutes without screaming.
  • Cate is a great sleeper at night and always has been.  Thank goodness!
  • Cate used to have overly sensitive hearing and could not pick out individual sounds.  Cate can understand over 500 words.

Hopefully I haven’t missed anything big.  It may sound like she cannot do a lot for a 20 month old but she achieves new goals almost every day so we are very positive.  I will go into more detail about all of these accomplishments, challenges, and how we are working to heal her in upcoming posts.

Brain Injury and The IAHP

I am sure you can figure out what a brain injury means, right?  An injury to the brain.  This can be from birth, like our daughter, it can be from an accident, a near drowning, a genetic disorder or any other scenario that deprives the brain of oxygen.  There are profound, severe, moderate, and mild injuries.  Not all injuries to the brain can be seen on an MRI or other image and every person has their own symptoms of a brain injury.  I believe this where the confusion begins.  If your child has been diagnosed with developmental delay, cerebral palsy, Trisomy 21 (Down syndrome), an autism spectrum disorder, dyslexia, learning problems, aspirer syndrome or any other conditions that affect the function of the brain your child has a brain injury.  I know this sounds harsh and I am very so sorry for this.  From personal experience I can tell you that hearing those words are awful.  To be told that your child’s outcome is so uncertain that she may be blind, never crawl or walk, need multiple surgeries, have seizures for the rest of her life and never be able to feed herself is tough.  However, once you know what is wrong you can begin to repair the damage.

I posted earlier that at 3 days old Cate was diagnosed in the hospital with a Grade IV bilateral brain bleed with PVL.  You can also say that she has a severe, diffuse, bilateral midbrain and cortex injury.  In a way I believe we were lucky to find out so early on and have an ultrasound and several MRI images to show her injury.  There was no question that our daughter had this injury.  I feel for the parents that know there is something wrong with their child but have no physical proof from the doctor.  It doesn’t make their injury better or worse, just more undefined.

That is where The Institutes for the Achievement of Human Potential (IAHP or the Institutes) has been so helpful to many families including our family.  They are a non-profit in Philadelphia, PA that has been studying and helping brain injured children for almost 60 years.  They have worked with families from over 120 nations.  You will not find that they have done double blind studies and chances are your doctors have never heard of them.  But they are real and I have never seen another group with so many amazing results as they have.  Along with their own research they have worked with NASA, well respected neurobiologists, and many others.  I believe the reason they have such good results is due to the dedication of the staff and the many years working with brain injured children.  They believed early on that the brain is dynamic and ever-changing whereas others thought that brain growth was static.  In other words, once a brain was injured that was it, the injury would never go away and you could not get back that brain function.  Scientists now recognize the plasticity of the human brain and that it is incredibly capable of recovery and rehabilitation.  The Institutes is just 60 years ahead!  I have left out so much about the Institutes but you will see in future posts how their programs are helping both of our children.  We enrolled in our first course at the Institutes after I read the book “What to do About Your Brain Injured Child” by Glenn Doman.  Glenn is one of the founders of the IAHP.  This book explains how they got started, the science, and their philosophy.  Even if you want to help a well child this is still a good book to read to understand how the brain really works.  It is also full of good stories.  You can also visit their website at http://www.iahp.org and their youtube page https://www.youtube.com/user/iahpvideos.

We are very optimistic that with prayer, hard work, and help from the Institutes Cate will catch up or surpass her age level physically, intellectually, and socially but she will do this in her own time.  She has already come so far.  I am excited to share all of her accomplishments with you!

A quick look at the first 20 months

Catherine “Cate” and Charlotte “Charlie” were born in July of 2012 at 29 weeks gestation or 3 months early.  They had what is called twin to twin transfusion syndrome.  Basically Cate was getting too much food and Charlie was not getting enough.  Unfortunately too many identical twins end up with this problem and not everyone is as blessed as we were.  The doctor caught it in time and during a regular checkup we walked straight to the hospital and didn’t leave until after they were born.  Cate was 3lbs 11oz and Charlie was 1lb 15oz at birth.  Charlie was fairly healthy during her 8 weeks in the neonatal intensive care unit (NICU) but Cate was not so fortunate.  The first 3 days of Cate’s life were touch and go and we thought that we might lose her.  Having the doctor look at you and tell you that your child may not make it is something that I would never want anyone to experience.  But Cate is a fighter!  After being intubated and having two chest tubes put in she came through and began to improve.  On day 3 of her life we learned that she had a brain bleed and damage.  Before she left the NICU at 10 weeks of age we got her official diagnoses of a Grade IV bilateral bleed with PVL (periventricular leukamoalacia).  Finally, 74 days after our girls were born we had them both home.  It was wonderful!  Then the doctor appointments and work began.

Because the girls were premature, in fact they would call Charlie a “micropremie”, we had to be very cautious with their health.  The following 6 months after bringing them home we had regular appointments at the pediatrician, neonatal doctor, eye doctor, plastic surgeon, cardiologist, neurosurgery, neurologist, acupuncture, and physical therapy.  Doctor appointments have slowed down now that they are older but we are still visiting most of these doctors.

Charlie has been progressing very well.  According to the doctors and her parents she is a very healthy 20 month old.  Although she is small she is very strong.  Right now she weighs about 19 lbs.  She was a little behind developmentally with regards to her mobility and strength and was is in physical therapy once a week.  Now she has caught up with her age or ahead.  Charlie is walking, climbing, talking, singing, and into everything. She is a joy to everyone around her and we love her so much!

Cate is doing well considering her brain injury.  The neurologist diagnosed her with cerebral palsy (CP) at 5 months of age.  We have since learned that CP is a syndrome without a good definition.  It can mean so many things so we do not typically use this term.  She is brain injured or hurt.  She does have extra tone in her upper body and her hips.  This has limited her mobility and one of the things we are working on most.  Another noticeable effect of the brain injury was her vision delay.  She was diagnosed with cortical visual impairment.  Basically this means that her eyes are healthy but the connection in her brain has been damaged.  In March of 2013 Cate had her first seizure and was diagnosed with infantile spasms.  She continued to have seizures daily for 5 months.  Cate is not on seizure medication and has had 2 seizures in the past 10 months.  I would like to talk more about her seizures in a future post.  Cate is a beautiful girl with a very strong will.  She is currently about 22 lbs.

With the help of our family we found out about The Institutes for the Achievement of Human Potential (aka the Institutes) in Philadelphia, PA.  I would encourage anyone with children, planning on having children, or working with children to look at their website, www.iahp.org.  They are a non-profit group that has been studying and working with brain injured and well children for almost 60 years.  They have learned through various methods how to help hurt children and improve their symptoms dramatically.  They focus on healing the brain instead of treating the symptoms.  Their program consists of teaching the parents how to teach their children.  Our life has changed dramatically since finding the Institutes.

I want to stress that I am NOT a doctor, therapist, or a writer.  I am a mother who was looking for some help for my child and now want to share our story to help other families in a similar situation.