The Odd Life of the Lovebug Family

Lovebug Family August Happenings...

Little Ladybug is doing fabulous with her cochlear implant. The day her implant was activated was not world changing for her, she even declared the device was, "too loud." But as she has become accustomed to the new & different sounds she is more aware of her surroundings. She frequently will cup her ear and say, "What's that noise?" Many sounds are new for her, so we explain what they are.  Or she will tell us she hears something. Just the other night, she ran inside to tell me on her nightly walk with Papa, that she heard an owl hooting for the first time. This makes us so excited as parents to see her new discoveries and learn more about the world around her. Her first mapping session at CASTLE will be next week.

I ADORE

my Sisters!!!

Mrs. Ladybug has been having a great couple of weeks. Since my Campath treatment & last Duke appointment, I have been feeling on the upswing. I have also had lots of quality time with my extended family recently which is some of the best medicine for my soul. I am still in the process of the transplant evaluation. Once I complete it, the doctors will have a better idea of listing time. Right now my goals are to work on strength training and weight. I've lost alot of weight recently and am back to my pre-tx cf malnutrition weight status. My doctors want me to get a feeding tube to help fatten me up. I've had two feeding tubes in my past and although I am really not looking forward to the procedure or sporting around a smelly, uncomfortable, long tube that connects to my innards, I know it's whats best right now.

FosterBug is still with us and is doing well. We are praying that long term plans to be with us will be in FB's future. We don't know how it will all pan out, but we know if it's in God's plan, things will come together. Mr. & Mrs. L saw the movie, The Odd Life of Timothy Green. I really enjoyed the movie and cried throughout it. I could really relate to so much of the story line. I think this is a must see for all parents, but especially for those who have adopted and fostered. This movie reminds me of just how thankful I am for fosterbug and the impact FB has had on our lives. It hasn't always been easy, but so worth the while. The last several lines of the movie resonated with my heart so much. I was basically crying like a baby by the last scene. Please take your family to see this film!

Our friends Jesse & Whitney at the Surfin' Spoon

  I have been beyond encouraged by the out pour of love, generosity, prayers, and thoughts of others. We have had two fundraisers to try and raise Duke's recommended $25,000 goal for transplant expenses and have raised between $6-7,000. : ) Our community is beyond wonderful and I am very thankful for everyone involved. Especially to Milepost 13, South Beach Grille, Surfin' Spoon, & friends and family at Nags Head Church.
 

Mr. Lovebug has been very busy this summer. When he is not working at NHC as a worship leader, he has been working nights taking pictures for his business, Nathan Lawrenson Photography. To help with our family's growing medical expenses. On most of his days off this summer, he has been driving Gwyneth and I to our appointments at Duke & UNC. He is a man I deeply love and cherish. Mr. Lovebug started off his love of photography, not of personal portraits but of the OBX scenery. I've included a recent picture he has taken at one of his favorite locations, the pier.

“Because there's nothing more beautiful than the way the ocean refuses to stop kissing the shoreline, no matter how many times it's sent away.” -Sarah Kay

Definitions for italicized words:
Cochlear Implant: "A cochlear implant consists of an internal and external component. The internal component is surgically inserted under the skin behind the ear, and a narrow wire is threaded into the inner ear. The external component, which looks somewhat like a behind-the-ear hearing aid, is connected to the internal one through the skin via an external magnetic disk.
Incoming sounds are converted to electrical currents and directed to a number of contact points on the internal wire. This operation creates an electrical field which directly stimulates the auditory nerve, thus bypassing the defective inner ear. Unlike hearing aids, cochlear implants convert sound waves to electrical impulses and transmit them to the inner ear, providing people with the ability to hear sounds and potentially better understand speech without reading lips." -hearingloss.org
Mapping: programming a cochlear implant to the specifications and needs of its user.

Good bye RSV, Hello Rejection: Steady My Heart

This month and a half has been a bit tough. The after effects of the RSV have included pneumonia, lung infection and concerns of rejection and my PTLD returning. Physically and emotionally, this month has been very hard and exhausting.



My doctors have been most recently concerned with some spots that have managed to pop back up in my lungs. I had xrays, cat scans, pet scans, bronchoscopies and blood work this past month, all of which came back inconclusive as to if the spots were infection or cancerous. My doctors then ordered a second bronchoscopy to biopsy my lung lymph nodes and suspicious spots to get some more clear cut answers. I was very relived to find out, my PTLD was not the culprit, and that I did not need to be concerned about malignancies in my lungs. I was informed, that for the first time in my donated lungs almost 4 year life span, I have grade 2 acute and chronic rejection.



My doctors have been concerned all along with this RSV infection, since it put me at a much higher risk for developing rejection. I am thankful I am at a transplant center that is aggressive with it's care and was able to diagnose it early on.

Because of the rejection and infection. I am being treated with a strong IV antibiotic for the infection and another very powerful IV steroid and added immunosuppressive drugs for the rejection. It's going to be an interesting balance of reversing the rejection and controlling the infection. Added immunosuppressive drugs will increase the risk of cancer, which for me and my history, makes the balancing act a little more complicated. But I know at I am in great hands at Duke. And I can be assured that I am in the palm of my God's hands, which give me the peace I need to get through this obstacle.



These next several days and weeks will be tough on my body physically and emotionally. But I need to remember, despite these hardships, there is a reason, a purpose to it all. I also need to constantly remember about how much support we have received during all of this. My family, friends, and complete strangers have reached out to our family. Praying for us, sending us encouraging notes, making meals, watching our children and just loving on us. For that, I am so grateful for and undeserving of. Thank you.

Even it hurts
Even when it's hard
Even when it all just falls apart
I will run to You
Cause I know that You are
Lover of my soul
Healer of my scars.

RSV: Respitory syncytial virus

RSV: Respitory Syncytial Virus

If you are wondering, like me about the S, in rSv. Syncytial means: multinucleate mass of cytoplasm that is not seperated into cells.


RSV is a common virus with cold like symptoms. Not usually dangerous for the typical child and adult. Their immune systems usually take care of it in a few weeks. But it can be dangerous for children who are at risk like those born premature, those with lung problems, and the immunocompromised.


Here are some factiods about RSV:

• It's the most common cause of lower respiratory tract infections in children worldwide.
• Virtually all children contract it by the age of three.
• It's the leading cause of pneumonia and bronchiolitis in infants.
• It may play a major role in the pathogenesis of asthma and chronic obstructive pulmonary disease.
• It causes significant morbidity and mortality in immunodeficient patients.
• It spreads easily from person to person through contact with respiratory secretions.

Ladybug was given shots to prevent RSV for her first two years of life. This is a common practice for premature infants, since during the first 24 months of life, RSV can lead quickly to bigger issues. Ladybug girl presented symptoms of a cough and fever a few weeks ago and later on a runny nose. It is her first time with RSV and as a child with chronic lung disease of prematurity, makes me a little nervous as her mama. We have been treating her with tylenol, xoponex and pulmicort, and some cough medicine at night to help her sleep. It has taken her some time, but she seems to be at the end of this yucky virus. She used to loathe her fish face mask, but now as long as we keep her entertained, is great about holding it herself and doing her breathing treatments. We think having PFT tests as an infant, which forced her to cry through a mask, began this fear and traumatized her.


As a lung transplant patient who is immunocompromised, this virus has been the first that has given me a high febrile temperature and has given me trouble with breathing since I was transplanted. Whenever you have high temps or dropping PFT levels, it is a sign of infection and time to call your transplant coordinator. I called mine, and they told me to head over to the local ER for tests. I tested positive for RSV, was given fluids and a prescription for Ribavirin and sent home.

Now this is the part that makes me a little upset. Of all my years of life, never have I been denied a drug by my insurance company, except for a vitamin which I can handle. My insurance denied the oral Ribavirin because, "coverage is provided for use in combination with an alpha interferon for the treatment of chronic hepatitis C. " The drug seems to be mainly used for this purpose, but if you read further, it is also used for respiratory purposes. So, instead of purchasing a simple drug on my behalf I was put inpatient to be treated. Yes, insurance company: deny me a drug so you can instead pay for a 5 day hospital stay, that will save you some money! : )

In the end, it is a good thing the insurance company denied me I suppose, since I do have RSV related pneumonia. Plus, having RSV puts one at risk for BOS, which I definitely want to stay away from! All things happen for a reason, right?

Antibiotics are only effective against bacterial infections and viruses are generally a little trickier which is why they say, "there is no cure for the common cold." My RSV is be treated by inhaling an antiviral teratogenic and mutagenic drug called Ribavirin. I inhale it with this mask which is attached to a small particle aerosol generator and am covered in this lovely plastic tent. Duke, if one of the few hospital centers who performs this aerosol treatment. I get to inhale this breathing treatment at night for 6 hours. I will complete this treatment after 5 days. My nose blocks up with the chalky crystals every 45 minutes. As soon as the six hours is up, I take off my mask and fall into a deep, restful sleep.

I miss my family very much during this 5 day hospital stay.

I am using skpe for the first time and have enjoyed skyping with Mr. L, my family, and especially our children. The super bowl was last night, but skyping with my daughter was the highlight of my evening! I miss my Ladybug kisses very much. I miss our Fosterbug's hugs. And I miss Mr. Lovebug who has been amazing through this all and can't wait to get home to the Lovebugs 3.


The nurses, doctors, and staff at Duke continue to make me thankful for the blessings of incredible care at this top notch facility. As hard as it is to be away from my family, the nurses here are like family and make my stay feel like, home away from home.

I also have received letters at Duke from family, friends and strangers letting me know they are praying and thinking of me and sending love and encouragement my way. These kind words touched my heart and soul. If you sent one of those letters, I can't tell you how much that impacted me. Thank you.

A big game is coming up this Wednesday here in Durham, NC. UNC vs. DUKE. I will depart the hospital that day with this cheer:

GO.........

Cochlear Implants

Ladybug's hearing loss has been a progressive loss. She passed the newborn screening test. It wasn't until a year in a half later, when she was re-tested, that the doctors became concerned. It appeared that Ladybug had a sensorineural hearing loss and it was progressive. This could be a result of many reasons. We know from genetic testing, that her hearing loss is not genetic. We do know, being an extremely small premature infant comes with many risk factors. One of which is vision and hearing loss.



It was right after her second birthday she was fitted with her first pair of phonak hearing aids. She loves her hearing aids. In the morning, if we do not put them in right away, she will ask for her "ears." The hearing aids help amplify the sounds she can hear. But because of her severe to profound hearing loss, there are some sounds she is just not picking up. Most of them are in the high frequency range. Here is a demo of what hearing loss sounds like.

It appeared this fall during a typical audiological and ENT appointment, that Ladybug's hearing was becoming progressively worse. Her doctor at UNC wanted for us to come back in three months. It was at this latest appointment her doctor informed us, he would recommend a cochlear implant for her right ear.

We are in the process of taking this information and doing some research on children who have one cochlear implant along with one hearing aid. If Ladybug had an implant, she would be hearing naturally with amplification in one ear and unnaturally but with the sound field she is missing in the other. We want to make the best decision for her. We understand that making the decision sooner then later, will only benefit her, if we feel that it's the right thing for her at this time.

Any advise from parents of children who have had both a cochlear implant and a hearing aid would be greatly appreciated.

So Long, Farewell

Tomorrow, we pack. Ladybug to the grandparents, Lightning bug (our foster daughter) to our friend's R and LC, Pugbug will be packing to visit Uncle Frank, and Lovebug and I will be packing for a few days visit to Duke University Medical B&B. I will hopefully have some stomach issues resolved with a gallbladder removal and two other procedures in my stomach. I am not looking forward to being away from my girls, sleeping in a single bed, and taking medications that make me sick to my stomach. But I am thankful for what this stay represents.


TWO YEARS and SEVEN MONTHS since my last overnight stay in a hospital!

Wow, over TWO years!

Let's just say, It has been over TWENTY YEARS since that last happened.

Ever since I was 8 years old, I have been a patient at Children's Hospital of Philadelphia and then at Duke for at least a 2 week stay each year. The hospital became my second home. But not any more. It is such a nice blessing, to enjoy and appreciate this moment of being free for so long and not needing medical treatment overnight in a hospital facility. It will be weird going back. I may not remember what to pack. I know for sure: a fan, my own toiletries, my computer, something to read, a blanket. But what else am I missing? Clothes, yes. Because I have always refused to wear the hospital gowns. Except when I was in the ICU setting. I need to partner up with someone, and come up with some tasteful gown-wear. Pictures, yes. So I can show all the awesome staff at Duke how far Gwyn has come from her 1 pound, 6 ounce preemie cute self.

Thank you all for your prayers for this surgery. Lovebug and I will now, live and love each other gallbladderless. Sounds so romantic. It's nice to share something medical in common. We can compare scars. Perhaps, I should mention to Ladybug's surgeon next month about our family's inheritance of gallbladder issues. Yes. Ladybug is scheduled to have ear tube surgery #2, and eye muscle surgery #3 on September 2nd. Please be in prayer for her also. We would all appreciate it. Our medical journey seems never ending.

The end.

Earrings for Reese

Please visit this site to learn more about this beautiful little girl name Reese and her journey.

Reese and her family are such an inspiration to me. A group of my friends and I created homemade jewelry tonight to sell on her behalf to help with the extraordinary medical expenses they are facing.

Please take time to read about sweet Reese and her family.

And consider buying some of my handmade jewelry to go towards a great cause.

Thanks!

This first earring pair is made with purple, silver, and white jewels. I included two purple shells and a "believe" and "wish" jewel. Since I am hoping, praying, believing and wishing the best for Reese. Perhaps, this could be for someone who is also going through a hard time who you believe in.

This second nautical pair is made with brown and blue hues and includes fish and lifeboat jewels. I really like this pair and hope it can go to someone who loves the beach as much as I do.


The earrings are being sold for $10.00 each plus shipping. The first person to respond to this post with their email information can receive their chosen pair for $10.00 plus shipping. I plan to make more in the future.

MnM's: Monday Night Mamas

Lastly, here are some of the ladies I created the jewelry with tonight. They are some of my favorite friends who I meet with once a week. We call ourselves, the Monday Night Mamas.

March of Dimes

Ladybug was born premature. She was born at 24 weeks. We support the March of Dimes organization for their premature birth campaign focusing on awareness and education.

Gwyneth has been one of the ambassador children in our county. We feel blessed to be apart of this campaign in which the money that is raised, "supports programs in your community that help moms have healthy, full-term pregnancies. And it funds research to find answers to the problems that threaten our babies." {March of Dimes}

Our local walk is in Manteo at the Roanoke Island Festival Park on May 7th beginning at 9a.m. It is a wonderful event and walk which helps us raise local support to this wonderful cause. If your a local, we'd love to see you there!

We believe in being an active part of our community, and to give back to the organizations which have affected our family directly. This is why we walk for the March of Dimes, the CF Foundation, and support other local events like the relay for life. I will have on my facebook, opportunities to help our family monetarily support these great causes.

I love this baby teaching us on how the March of Dimes is directly affecting babies and their research.

And it you can help by giving to Team Ladybug to help the research and work being done, please click here.

Thank you so much!!

Deaf & Hard of Hearing Community

I have recently come across some great resources for parents of children who are deaf and hard of hearing. I continue to learn so much through other parents who are blogging about their experiences. We have also been learning a lot from Ladybug's educators. I will be excited to share her progress as she is absorbing and progressing so much during this new year.

Here are some of the resources:

*Deaf Village: A great place to access blogs of those in the deaf community.

*Hear the World: A wonderful teaching initiative about hearing loss sponsored by Phonak. Ladybug's hearing aid producers.

*Hands & Voices: Information and networking for those in the deaf/hard of hearing community.

*Raising Deaf Kids: A group at Children's Hospital Of Philadelphia started this network. I love the special needs section.

*The Care Project: Our family has already attended two workshops locally and we love this program! It touches on the emotions associated with hearing loss with the goal of acceptance and advocating on our children's behalf to give them the best life possible.

*Beginnings: A NC program to educate and support parents. This is the first group that contacted our family to educate us and has been a great resource.

*Sign Savvy: Video dictionary of ASL, one of my personal favorites.

*Signing Time: A Favorite DVD learning guide that our whole family loves.



"According to the American Academy of Pediatrics, hearing loss is the number one birth defect in the United States – nearly 33 babies are born every day with permanent hearing loss, 1 in 1,000 have a profound hearing loss and another 2 to 3 in 1,000 have partial hearing loss." {Hear the World}

Read about a common misconception regarding hearing aids. Hearing aids will fix the problem, children can hear normally when they wear them. Our daughter has sensorineural loss and this isn't always the case.

And look at why this famous musician of my era, Joey McIntyre from New Kids on the Block is advocating for the deaf and hard of hearing community.

Online Hearing Test.

For those of you, like me, who can hear all the many sounds God created. Be thankful. Don't take any of your senses for granted!

Duke vs. UNC {Medical}

Dear Duke and UNC:

I love both of your facilities. You are the best in North Carolina. You are the best in this country. You may be the best in the world. I think you each should teach one another some of your strengths. I think you should share what you learned from your weaknesses. Kind of like with your sporting teams. "You got to give a little, take a little, that's how you live a little..."

A few simple measures I would love to see you learn from one another:

Medical websites

Duke:
Great website and navigation tool. Love the section on finding a doctor and their listed information. Very helpful. The healthview tool is phenomenal and so informative. Especially for a pulmonary/transplant/lymphoma/diabetic/ent/gi issues patient with a daughter who sees a cardiologist/pulmonologist/special infant care/entopthamologist/neurodevelopmentalist. It allows me to check my appointments, schedule my appointments, view my test results and so much more. Whoever came up with this system, brilliant. Now please teach UNC how to get one started. Excuse me UNC if you have one already. I have tried searching for one, and have yet to find it.

Medical Facility

UNC: Beautiful and very large. The indoors really impress me with their cancer patient awareness artwork/photography. I really like the personal aspect of connecting the hospital with patients and care. Seeing these as a survivor of PTLD, was very comforting and encouraging. I wish the hospitals could share stories and faces of patients like this in the hospital more often. I would love this type of artwork to be displayed at Duke.

Parking

Duke and UNC: Where does the money for parking go? Why are you charging patients money to park when they already have medical bills, co pays, traveling, time off, etc. being taking out of their pocket? I am sure there is a good reason. I really see a need for cheaper parking for chronic care patients and their families. Actually, why can't it all just be free?

To ALL Surgeons, Doctors, Nurses, Therapist, Phlebotomists, Housekeeping:

"When you are speaking to your team after a game, never talk about the kid who was the star of the game. Talk about what your other players did to help the team win. Be sure to spread the wealth... Then have individual meetings with one to three players to praise and reinforce. Make sure you touch them." -- Mike Krzyzewski

“I think leadership is never singular. In a good organization, it’s plural.” -- Mike Krzyzewski


Thanks for listening.

What do you love about your medical facility?

Thankful

There are so many blessings in my life right now.

I randomly found this picture this week. It brings back memories from 3 years ago. It was taken on Valentines' week.

Looking back, I am so thankful:

*I can hold, touch, kiss and speak with my daughter as often as I please. During this week I was able to see Lovebug for the first time. But I was not able to touch her right away. This was very difficult for me. I could not speak to her since I was trached and using the portable ventilator for visits.

*I can eat! I love to eat now, and I partly blame it on the 6 months, I had nothing but enteral tube feedings. Every now and then I had a special treat of applesauce and thickened juice. Eating used to be a battle for my first 25 years of life, now I can't keep food away.

*I can speak & laugh. Like I mentioned before, with a tracheostomy/vent I was not able to speak for quite some time. I missed being able to talk and to just plain laugh out loud. When I did laugh, my machine would beep non-stop.

*I can move. I love being able to go places now. Perhaps, this is also because I was strapped to my bed 24/7 for 5 months. I try to get out of the house with Gwyneth and explore the world each and every day. I feel privileged to do so.

*I can smell. During this time I could not smell. This may have been a blessing, since the hospital environment, especially the ICU is not filled with the most pleasing aromas. Even though my sense of smell is not at its best. I love inhaling my favorite scents: baby bath time, springtime, and foods.

*I can snuggle with my husband every night by his side. When I was hospitalized as a CF patient, Nathan and I would snuggle next to each other at night in the very small single hospital bed. With a ventilator, this makes it impossible, the times he did snuggle, my vent would pop off, and I would stop breathing. This made for a traumatic experience. I am very thankful for each night we spend together snuggling.

*I have new lungs from a donor who made the unselfish decision to donate life. I was waiting and praying every day for the possible donor and his/her family during this time. I hoped every day for a second chance at life. I am so thankful for this person and their decision.

*I can hang out with those I love the most: my family and friends. At the hospital, I felt like I was surrounded by a lot of love. My nurses, doctors, physical, speech therapist ect. all became my new friends. But I missed my church family, close friends and family back home. February marked the sixth month of being away from home. As the saying goes, "there is no place like home."


It was through this experience that I have learned to appreciate and cherish the moments I have. Moments of living, breathing, smelling, tasting and touching that which I love. It is good to be reminded, through pictures like these of where I have been and where I am now. To never forget and always be grateful. For each and every day with the ones we love!

A picture of my tiny little ladybug, three years ago this week.

Growing Up with a Chronic Disease

Growing up with Cystic Fibrosis was a challenge but my parents and family helped me live a very happy and vibrant, young life.

At a very young age, my body was dependent on many medications to help me battle against the inward physical deterioration that was taking place in my lungs. I was also dependent on enzymes that I learned to swallow to help my body digest my food. But most of all, I was dependent on my parents and family who so awesomely took on this challenge and placed it in God’s hands. Each and every day they so creatively found ways to allow me to live my life as a normal little girl with such abnormal routines.

Now, as the parent of a child with special needs I am so grateful for all the sacrifices my parents made on my behalf. Having a child with a chronic disease; your constantly in thought of medications, equipment, learning new medical lingo, huge expenses, hospital stays, doctor visits, limitations, emotional needs, and what their future may hold. I am sure the list could go on.

I would love to hear a perspective from a child with a chronic disease or parent and how they can relate to these sacrifices. How they look upward, when your world comes crashing down on you. What creative methods you have used, that have helped your child. And what good have you seen from such a terrible fate?

As I look back on the many wonderful things that my Heavenly Father has done in my life and think of how He used my CF and certain life circumstances, I can only be amazed and thankful for how He has used these burdens and turned them into blessings, both for me and for those around me.

“For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” {Psalm 139:13, 14}

The Hospital: A Poem

The Hospital

A building, a structure

A haven for the unwell

Where life & death are prevalent

A place so many dwell

Its outside frame seems somewhat dull

But inside; it’s quite a mix

The people there are what really matter

Without, it would be nix

Some enter it with confidence

Others with high hopes

Some come in with scared eyed looks

Others, unable to cope

Hearing the sad news of a loved one

An accident, disease, or scare

That led them to this place

It all seems like a night mare

The people here are universal

Races mixed and matched

People come in all shapes and sizes

From age 100 to just being hatched

The environment is distinctive

Some areas silenced with peace

The ER is certainly not one of them

Where most are barely at ease

The outwear is unique as well

For those who choose to stay

They wear scrubs, white coats, suits & stethoscopes

The patients wear what they may

It’s ironic that this building

Can hold so many mixed emotions

If only doctors could cure all

With some magic potion

This is a place for the dying

It’s a place for the bereaved

A place of caring, loving hearts

And hope for the well to soon leave

This place is called, a hospital

Those who enter it should know

That its worth all the pain and strife

If you leave from it and grow

-Tricia Lawrenson

{I wrote this several years ago, after living a good portion of my life behind closed doors in The Children's Hospital of Philadelphia and at Duke University Medical Center. Not only can a parent and patient of a chronic illness like cystic fibrosis can relate to this poem. But so many more lives who have been dramatically changed when walking through those doors.}

Apraxia

When meeting a little boy this past summer, something inside me clicked. I had an "aha" moment about my firstborn. This little boy had something called, apraxia. As his mother explained this disorder and how it related to him, I couldn't but feel an instinctive, gut feeling my daughter shared the same characteristics.

I told my daughter's therapists, doctors, anyone who was taking care of her of my suspicions. We even went to another hospital to get a second opinion to confirm these suspicions. They all agreed, my little ladybug showed some signs and most likely had apraxia.

When ladybug speaks, it is hard to make out what she is saying. She has a hard time getting words out. When she first learned to speak, it sounded like "ba ba ba ba..." Mama sounded like, "Aba" and so on. Her speech is slowly progressing and we are so excited. She still struggles to sound out all of the correct vowel sounds. And she also has a hard time saying multiple syllables. Her "go" sounds british, and her no sounds like, "mo." Her "oh no" is the cutest thing in the world. It sounds like her favorite character, "elmo." So if your around her and she were to drop something, you may hear her referring to that little red guy with googly eyes. But really, she is saying, "oh no."

A great website I found helpful when learning about apraxia.
http://www.apraxia-kids.org/

What is apraxia?

Apraxia of Speech is considered a motor speech disorder. For unknown reasons, children with apraxia have great difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate that are necessary for intelligible speech. Apraxia of speech may also be called verbal apraxia, developmental apraxia of speech, or verbal dyspraxia. No matter what it is called the most important concept is the root word "praxis." Praxis means planned movement. So to some degree or another, a child with the diagnosis of apraxia of speech has difficulty programming and planning speech movements. Apraxia of speech is a specific speech disorder.

{apraxia-kids.org}

up and down

Life post transplant has its ups and downs. Having a cystic fibrosis (cf) gene free set of lungs to breathe with gives life an up feeling every day. Trading one set of problems, issues, & concerns for another can be a downer.

Then there is my special case: getting very sick, very quickly, being on a ventilator for 4 months, going through chemotherapy... all make the questions of why variable. I have had some memory problems since my 2008 transplant. They could be related to all of my special case scenarios or possibly the medications I am now on. I decided along with my doctor to switch my main immunosuppressant medication. I did so, in hopes my memory would improve. When I made this big move, the first couple of days I had my first sinus infection since last spring. It seemed a coincidence. Then my stomach was really, really bothering me. My doctor thought, not so much a coincidence. And so now, I refriend my old immunosuppressant medication and risk a bad memory. My phone is now my recorder of all things, and I am trying to adapt as best I can. The palm-pre for free was a great deal! My stomach is feeling much better. And as we all know the saying, "When Mama is not happy, nobody is happy." I can officially say, "I am feeling better and am happy again. Very Happy."

This week I am thankful for donors, thankful for cf free lungs, thankful for the medications that keep me alive. But most of all, I am thankful for a happy stomach. Smile.

November: Premature Awareness Month

Here is some information about common premature health risks.

Our little Lovebug had surfactant given to her before birth which gave her a greater chance of survival. Because of the oxygen and respirator machines she was on, she had ROP, eye muscle surgeries, wears glasses for nearsightedness, and Chronic lung disease of prematurity.

We are thankful each day for the March of Dimes and the strides they are making in research and coming up with better solutions for extremely premature infants which are at great risk.

The following article is from the March of Dimes website. It talks about research being done and treatment.

"Premature babies are at risk of many serious medical complications. One of the most common of these is respiratory distress syndrome (RDS). Babies with RDS struggle to breathe because their immature lungs do not produce enough surfactant, a protein that keeps small air sacs in the lungs from collapsing. March of Dimes grantees helped develop surfactant therapy, which was introduced in 1990. Since then, deaths from RDS have been reduced by two-thirds.

Although surfactant treatment was a major breakthrough, March of Dimes grantees continue to improve it. About 20 percent of babies with RDS do not respond to surfactant treatment. Natural surfactant contains four known proteins, called SP-A, SP-B, SP-C and SP-D, but surfactant treatments contain only SP-B and SP-C. Grantee Ka Yee Christina Lee, PhD, of the University of Chicago is studying the structure and function of SP-B in order to design an improved synthetic surfactant that can mimic the activity of the natural protein and be effective when the one currently available fails. Along with surfactant, many babies with RDS receive additional oxygen and mechanical breathing assistance. These treatments, though lifesaving, can contribute to lung injury and a chronic breathing problem called bronchopulmonary dysplasia (BPD). Up to 50 percent of the smallest survivors (under about 2 pounds) develop BPD. Machiko Ikegami, MD, PhD, of the University of Cincinnati, is investigating whether adding SP-D to commercial surfactant treatments will help prevent BPD. This surfactant protein appears to help the immune system fight off lung infections and may help prevent the inflammation that contributes to lung injuries.

Lifesaving oxygen treatment unfortunately contributes to retinopathy of prematurity (ROP), a leading cause of blindness in premature babies. It results from abnormal growth of blood vessels in the retina. March of Dimes grantees are seeking to find out how too much oxygen triggers this response. The retina is the delicate light-sensing tissue that lines the back of the eye and sends messages to the brain. In severe ROP, the retina may detach from the back of the eye, resulting in loss of vision. As many as 16,000 premature babies in the United States develop some degree of ROP each year. The smallest babies, those born at less than 32 weeks gestation, are at the highest risk.

Laser and other treatments can sometimes help preserve vision in babies with severe ROP. Grantee Guo-Hua Fong, PhD, at the University of Connecticut Health Center in Farmington, is seeking to find out whether a specific gene becomes overly active when there are high levels of oxygen, possibly triggering the abnormal growth of blood vessels in the eye. If so, it may be possible to develop preventive treatment by inactivating this gene. The outlook for premature babies has improved greatly. However, many of these babies face serious complications and lasting disabilities. Many March of Dimes grantees seek new ways to improve the care of these tiny babies, and others strive to prevent premature delivery" {March of Dimes}