Long Over Due Update

To bring everyone up to date...

For quite a while now Paige has been having questionable episodes that left us wondering if her seizures were back.

She was first diagnosed with epilepsy 2 weeks before her 4th birthday, following a seizure on a swing at the playground. An EEG showed continuous spikes and she was put on medicine. Her meds were changed a few times and she ended up on Depakote by age 4 1/2. Each subsequent EEG showed continuous spikes and her meds were adjusted. By the time she was 5 1/2 she was on a toxic dose, which was evident by her blood test results. We had changed neuro's a few times and finally ended up with one who explained that due to her prematurity, her EEG's may always be abnormal. The new neuro weened her from her meds since we weren't seeing any seizures.

Right after she turned 6 we moved to a new state. Her new neuro completely agreed with her previous one and Paige remained med free, despite each and every EEG being abnormal (continous spikes).

Due to the recent questionable episodes we headed back for an EEG 2 weeks ago. Last night I received a message from her neuro that her EEG was normal.

Was I jumping for joy? Nope. An EEG is a snapshot in time. A clean EEG does not mean that she is seizure free. What was also bothering me was that I was present for the EEG and witnessed the spikes myself. I also wondered how we could go from having abnormal results on EVERY EEG to all of a sudden having a clean one.

Today we met with the PA at the neuro's office. She also shared my reservation about the clean EEG. She did say that some kids "grow out" of their brain abnormalities around Pagie's age but was quick to say that she is also concerned with the recent episodes. She ordered a 24 hour video EEG, which Paige will have (in hospital) some time at the end of January.

I want to thank everyone for their well wishes, both in the comments and by personal email. The kind words mean so much to us.

As for the other reason why I haven't been posting to my blog as often... A few months ago I started feeling sick. Recognizing that I had gestational diabetes with my 2nd pregnancy, I pulled out my meter and started checking my blood sugar levels. It became pretty clear why I was feeling ill. Most all of my 2 hour blood sugars were over 250 (with a few at 300)! (should be below 120).

I headed off to our GP who was not worried at all. My A1c levels were somewhat within normal range which left him thinking that I may simply have an infection somewhere. After having an allergic reaction to the first antibiotic (sulfur drug) I completed a course with a new one. My blood sugar levels were still high, despite me changing my diet to include ONLY salad and croutons (no dressing) for all 3 meals a day. I had lost 5 pounds in only 2 weeks. The doctor was still not worried and sent me on my way.

Over the next few weeks I did nothing but sleep and eat salad, now without croutons. I could not introduce any carbs whatsoever. I was able to get my blood sugar levels close to normal but my morning sugar levels were never below 180. I had been feeling so sick for so long and now I was only eating salad and my weight was dropping. Granted, I needed to loose weight but it was coming off too fast. I decided to go to an endocrinologist. As he scrolled through my meter he became equally as concerned as I had been and prescribed medicine.

I'm finally starting to feel better but I still can't have many carbs without my sugar levels flying over 200. Due to the extreme fatigue, blogging became the one thing I had to let go for awhile.

I'm back now and have lots to say. Thanks for sticking around and I hope you all come back for the upcoming topics.

Have a safe New Year's Eve everyone!

I'll be back soon

Yes, I'm still here.

I'll be back soon with a new post and an update. Thanks to all who have emailed me with words of encouragement about the possible return of Paige's seizures.

U.S. Gets Low Marks For Rise In Premature Birth Rate

Recently an article appeared in the LA Times titled "U.S. Gets Low Marks For Rise in Premature Birth Rate".

One aspect I found interesting was that the blame game has shifted a bit. The March of Dimes is notorious for ads depicting the cause of prematurity to be maternal smoking, drugs and lack of prenatal care. In this article, however, the finger is being pointed in other directions. Maternal age, rise in c-sections, in vitro, A.R.T (assisted reproductive technology) are all mentioned.

Dr. Alan Fleischman, medical director for the March of Dimes, comments,

"There's been a change in the way we practice obstetrics," Fleischman says.

That change, ironically, is partly due to lifesaving technologies developed to save preterm infants, Fleischman says. These have made many obstetricians feel that they've succeeded if a woman doesn't deliver before 34 weeks and that babies are more or less out of the woods by that point in the pregnancy.

This belief has lowered doctors' trigger points for performing an elective induction and cesarean delivery before a fetus has reached full term. If a pregnant woman is experiencing minor difficulties (or sometimes if she is simply feeling uncomfortable), some doctors will deliver the baby prematurely thinking that it is better for the baby to be in the neonatal intensive care unit than the womb.

"The problem is, they haven't taken into account that even late-preterm infants often have bad outcomes," Fleischman says. These babies suffer some of the same immediate problems that more premature infants experience, and often struggle with subtle developmental problems later.

"Getting to term should be the goal," he adds. "We don't want to stop one medically needed early delivery. But many elective inductions and cesarean sections would benefit from more careful consideration."

Engage With Grace

This past week I was contacted by Paul Levy (who blogs at Running A Hospital) asking if I would participate in a project called "Engage With Grace". I gladly accepted. I've had personal experience with watching a loved one die the way they chose and unfortunately I've also had experience watching a loved one die without their wishes being heard. "Engage With Grace" will help facilitate an important discussion that everyone should have with their loved ones. If anyone would like to add this post to their blog (should be left up starting today and ending Monday) please email me and I will send you the code.

Stacy

******

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can…at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Lets start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

10 Years Old!

I had been working on a blog post for over a month now, spending most of my writing time staring at the screen and crying then deleting anything that I was actually able to type.

I still can't figure out why this birthday is hitting me so hard. It has taken me by surprise.

On Paige's first birthday I was an emotional wreck. I was fine through all of the planning. I was fine that morning while I was setting up the large room we had rented that would be holding the 56 attending guests. I was fine during the time we greeted each and every person who came to celebrate Paige's first year of life. Then, stupidly, I decided to give a speech. (people who know me well can attest to the fact that public speaking is not difficult for me). Even as I write this today, I begin to cry when I think back to that day. I opened my mouth, prepared to thank everyone for their emotional support, when out of my mouth came this squeaky voice. Then the tears started. Really started. It wasn't a pretty cry. It really wasn't a pretty cry. All of the hell we had been through was hitting me. It picked that time to attack me and I couldn't function. I turned to my husband (anyone who knows him very well can attest to the fact that he HATES public speaking) for help. He stared back at me with this look of "what the heck happened to my wife?" and did not say a word. Looking at him made me cry harder. We had been through so much in one year and here we were, still together, holding our beautiful child. I managed to squeak out some lame, very short, speech and then ducked out of the room to cry. It was an ugly cry. Primal tears. Anger. Fear. Joy. It was all there. It was painful. Still is. I had never allowed myself to cry much before that moment. There I was, outside of a room filled with 56 people, in the midst of an ugly cry that I couldn't stop.

Each year Paige's birthdays were emotionally easier for all of us. Each year the NICU experience consumed less of my thoughts on her special day and ended up as only a late night mini conversation with hubby. I am so thankful that the NICU memories can take a backseat now.

Back on that day of her first birthday, I never could have imagined a birthday without the main focus being the pain of the NICU time.

As Paige's birthday approached this year I was taken aback by the flood of emotions. It had been easier each year. Why was I going backwards now? I am still not sure why but it has upset me because I couldn't even get a blog post written. Geesh! I'm never at a loss for words. lol

Then along came an email from Chris. Oh Chris, you have no idea how much your words helped me (thank you! thank you! thank you!). You are right, "we have come a loooooooooong way baby!"

Paige is doing wonderful. Homeschooling was the right choice. She has gained about 6 pounds and looks healthy. Her meds are working and her skin is healing. She is an avid store rock wall climber and would do it every day if she could. She is surrounded by family (who moved here to be near her) who loves her very much. She has a strong spirit-one that drives her to many new areas. She is in tune to her surroundings and the people she encounters. She feels strongly about many issues that, once given the opportunity, will talk your ear off about. She is a beautiful person. We are all so lucky to have her in our life.

Double didgits! 10 years old!! Woo Hoo!!

We decided to take a family birthday vacation to a large indoor waterpark. We all had lots of fun. On her birthday we had a party with her local grandparents. I caught myself staring at her, in awe of her. She really has come a long way. I know the future does not guarantee that her path will always be this good. But, for now, we are enjoying these good days.

My dearest Paige... Happy Birthday!!!










(Correction... Hubby just read my blog post and has a bit of a different memory from Paige's 1st birthday. First he wasn't happy that I said that he hates public speaking. Correction... he only is comfortable speaking in public if he has written the speech ahead of time. 2nd correction... Hubby is sure he did say something when I was at a loss for words. Jokingly he told me that he said something about the blubbering person next to him but all joking aside, he is sure he said something. lol Gotta love hubby's memory!)

Please Help Ashton - Video is at the conclusion of the post

Ashton is a 3 year old former 24 week preemie who is having episodes like the one captured in the video. Shannon (mom) has asked if I could post the video in hopes that someone may have an idea as to what these episodes could be.

I know some of you have seen this video when I sent it out last year, asking for your help. Unfortunately he is still having the spells, despite a lengthy stay in the hospital to get to the bottom of them.

Here is info about Ashton from December of 2007...

MRI in May 2007 that shows mild PVL.
Ph probe yesterday....not sure what yet. Had one about 9months ago
that showed reflux. duh
EEG (2 times) - they were abnormal but no seizure activity
*they are saying seizures (some of them) from me describing the
spells. However all docs that have seen Ashton have a spell have said
no it isn't a seizure. (he did them in ICU in Feb06)
Echo 8 weeks ago was fine. They discharged him. I have however heard
that echos do not show every heart problem there could be.
Last lung xray showed thickening of bronchial walls.

Born june 10-05 at 24 weeks 1.9lbs.
G tube placed Oct05
Spells started Nov05
Dec05 discontinued domperidone due to severe EP effects.
Jan06 home from NICU
4 days later back in b/c had 7 spells at home
Ended up in ICU on vent. Spells continued on vent.
Sats go to 20s, 30s and heart rate drops.
GJ tube placed and spells went away until he had two in July06(same
day), April07, June07 and then Nov07

Here is the most recent info provided by Shannon (sent to me on Oct. 20, 2008):

Okay long story short, we know that they are not seizures. He has had four eegs all with no seizure activity. He has had full cardiac workups showing nothing there at all either. I do have to say though that I have had two surgeons that have worked on him come out and say that he is shunting. No holes are seen/found.

If on a monitor while this is happening his oxygen sats will read anywhere from 20-40. His heart rate does not change MOST times.

His recent stay in ICU on a vent he had 11 of these episodes while sedated. When they try to bag him they either can't or it is VERY hard to. The doctor at this stay automatically thought of pulmonary hypertension. Echo was fine.

He has had a CT of his lungs that show not much more than BPD and blocked areas most likely from micro aspirations.

We thought they may be related to reflux however the ph probe and oxygen study showed no correlation between reflux and desats.

He frequently as well as desats to 60s, 70s and 80s. Not nearly as scary as the one shown.

This spell on video, just before it he was about to take a poop. Which made me think cardiac as well. However I have seen these spells happen out of nowhere with no warning.

Sleep study showed sleep apnea. Obstrutive, hypopneas and central. CO2 levels are higher than normal (about 70). The doctors told me that oxygen is basically toxic to him.

Scope showed airway was fine. Adenoids and tonsils are fine.

Also, Ashton did have a fundo in Feb. 2008 and now has a g tube instead of a gj.


Thanks to everyone in advance. Anonymous posts are completely allowed, as I am sure those in the medical field do not want their names used since Ashton is not their patient and they do not have full access to records.

WARNING... THE VIDEO IS VERY EMOTIONALLY HARD TO WATCH.

Make video montages at www.OneTrueMedia.com

Peanut Allergy and Halloween

Last year our son was diagnosed with a severe peanut allergy. (of course I blogged about it)

Although it was right before Halloween, he was only 1. He was more excited about walking around and knocking on people's doors. He didn't care about candy. Heck, he didn't even know what candy was at that age.

Well this year he is almost 2 1/2 and wants to do everything that his older sister is doing. He knows Halloween is coming. He loves his costume and already has the sound effects down pat. His sister can't wait to walk around with him.

Hubby and I? We both wish the holiday didn't exist. We know that this may be the year that he feels sad because he can't have the candy. I'm angry at the allergy and sad for our son.

We plan on letting him carry around his little pumpkin and go trick or treating. We are going to have little treats to put in the pumpkin when his sister gets her candy but I know we won't fool him. I'm all about honesty with our kids but he is too little to understand why he can't have the candy.

Anyone have any ideas? Does anyone have any "been there done that" advice??

On a separate note... please check back in a few days. I will be posting a video and a request for help from Shannon for her son Ashton.

Cerebral Hemodynamic Changes During Intensive Care of Preterm Infants

Interesting article in the October 17th issue of Pediatrics.

http://pediatrics.aappublications.org/cgi/content/abstract/peds.2008-0768v1?papetoc

I only have access to the abstract and I never know what I can reproduce legally so here is a snippet of the article...

OBJECTIVES. The objectives of this study were to examine the circulatory changes experienced by the immature systemic and cerebral circulations during routine events in the critical care of preterm infants and to identify clinical factors that are associated with greater hemodynamic-oxygenation changes during these events.

CONCLUSIONS. Routine caregiving procedures in critically ill preterm infants are associated with major circulatory fluctuations that are clinically underappreciated and underdetected by current bedside monitoring. Our data underscore the importance of continuous cerebral hemodynamic monitoring in critically ill preterm infants.

Eye Doc Update

Paige had stage 2+ ROP which was diagnosed while she was still in the NICU. She was tested frequently and it never progressed to stage 3 and she never needed surgery. Upon discharge she was tested again, which showed she was still stage 2+.

A few weeks after discharge she was tested again and it was gone. Completely resolved.

Jump ahead to age 6. We moved to a state that requires all children to have a current eye exam before starting kindy. We saw an optometrist who was freaked out by what she saw. She scared the heck out of us, gave Paige glasses, and sent us on our way.

We ended up seeing an ophthalmologist who specialized in children with ROP. He said that she had scar tissue from her ROP, which may be what scared the optometrist. He felt that there was no reason she needed to wear the glasses at such a young age because her eyes were not that bad.

The following year (age 7) he saw a change in her vision but still felt that she did not need glasses. Paige wasn't happy about that because she could not see distance. She started wearing her old glasses (from the optometrist) on and off.

Age 8... she was determined to get glasses. And she did. The opthamologist felt that the change in her vision was a bit concerning but was confident that it was not due to her ROP. He felt that it was genetic. (only my MIL had glasses at a young age)

Today was her annual check up. Her vision changed once again. (we knew this because Paige has been saying, for months, that her vision has changed) I talked to the doc in detail and asked a bunch of questions (thank you Sarah). He agreed that her vision change is more than usual but still felt that it was due to genetics and not her prematurity. I no longer agree. I asked him about her scar tissue. He agreed that she had scar tissue due to the ROP and that it would prevent her from ever seeing 20/20. But he felt that her scar tissue has nothing to do with her nearsightedness. He said that ROP damage usually only affects close vision. That is absolutely false.

He gave me that smile. Something that I cannot stand. If the smile could talk it would say something like, "oh, you shouldn't worry your self with all of these big medical terms. just trust me". I hate the smile!! He then turned and said something like, "She was such a wee baby and her eyes look great for being such a wee baby. Someone upstairs was looking out for her." Ok, those of you who know me and have been paying attention on this blog know that I also hate that statement!!

I asked him about her risk for retinal detachment to which he replied, "Well, there is a pretty good risk there based on her ROP and her vision change. She should never play any contact sports. Soccer, basketball, baseball, softball, volleyball... all out of the question for her."

Ummm, when were you planning on telling me this? If I hadn't asked, you wouldn't have told me this! You were half out of the office when I stalled you with my questions!! ARGH!!

I obviously didn't say that to him but I sure did flash him my *smile*. I don't think I have to tell you all what my smile would have said if it could talk.

Paige was not happy about getting her eyes dilated but she is happy that she'll be able to see better again.

When we left the office she chuckled about the docs' statement and said something like, "I thought he meant that someone on the floor above his office was looking out for me."

I love her attitude. I love her spirit!

"How Come...?"

When Paige starts a sentence with those 2 words I never know what's going to follow. I do know, however, that it will be something this is hurting her deeply.

"How come my legs work differently than other kids?"
"How come I have pain and the doctor didn't believe me?"
"How come I have OCD?"
"How come the kids don't want to be my friend?"
"How come I lived but other babies died?"

As soon as she started talking in full sentences, the "how come?" questions started. They are never simple ones either.

On Sunday, from the backseat, came another one, "How come I'm the kid who never gets invited to birthday parties?"

I tried to make her feel better, forgetting who I was dealing with in the backseat. "Oh honey, it is one of the drawbacks when you are homeschooled. You aren't around such a large group of kids like you are in public school."

It didn't work.

"But Mom, how come I wasn't invited to parties even when I was in public school?"

Without missing a beat hubby responded, "Ya know, as you get older the number of kids that get invited to parties gets smaller. When you are little the parties are big and the whole class gets invited. But when you are older you only invite a few of your best friends to your party."

"But how come I am NEVER invited?"

She then got sidetracked by her brother and the conversation was over.

For her.

Here we are, 3 days later and it's still eating me alive. She is right, she is never invited to parties.

This morning hubby and I were talking about it while he was getting dressed for work. When I asked, "How can I fix this?" he turned around and gave me "the look". No words needed.

Preemie After Preemie

During a recent discussion an anonymous person wrote:

"I'm not trying to be mean, but how about starting with not having another child since you obviously can't afford it?"

I replied:

"You may be shocked by what I'm about to say but... you are right.

Hubby and I did not plan on having more kids. Not only were we afraid that we would have another preemie (since we didn't know why my water broke with Paige), we also knew that we couldn't afford to have another child with disabilities. Also, every time we had talked about trying again (a few years after Paige was born), we both knew that we would not be able to live with the guilt if the 2nd child ended up with long term issues secondary to prematurity, just because we wanted more children."

I didn't realize that I'd be opening a can of worms when I posted my reply. But, since it's open already (which is evident by the emails I received), let's discuss.

Should people have more children if they don't know why their previous pregnancy ended early and thus cannot be sure their next child will not be born early?

Before you say that it is a personal decision, think about how it could affect others. Government assistance, health care costs, additional resources needed in school, etc... all ways that ones decision affects others.

The topic of over population (not relating to prematurity) is a hot topic. I found it quite interesting while reading a recent issue of my VegNews Magazine that people are choosing to not have children to control the population. Salon also took a comprehensive look at the issues in their article "Do We Need Population Control?".

I am not trying to start a war here but I do feel that the topic is worthy of discussion. Count to 10 (or higher) before leaving a comment please. And, once again, please leave your deity at the door.

End of Summer Update

I've been absent lately and while I would like nothing more than to say that I am back on track and ready to blog regularly, that would be stretching the truth.

We traveled a lot this summer, really exotic locations. I started a few good books that I've been engrossed in and could not put down. Then we decided to finally finish the bedroom in our basement and worked really hard on cleaning out the storage room so it wouldn't be a fire hazard. Finally, I decided to put myself before the kids and concentrate on my own health.

Then I woke up. It was a nice dream while it lasted. lol

Life is rough at times. Life is good at times. The past few months have been filled with both scenarios.

During the summer we took Paige off of one of her mental health meds for her OCD. The doctor felt that the cognitive behavior therapy was working since she had almost completely stopped her skin picking. And, honestly, I wanted to believe it too. Why wouldn't I want that for my child? To be free of one med and free of oozing scabs all over her body was something we never thought possible. She worked so hard to stop the picking. When we made the decision to homeschool it seemed to lift so much of her anxiety. We are so proud of her.

We knew that there was a chance that her mood would suffer for a few weeks until her body got used to the med being gone. And, suffer it did. But, she still managed to audition for a play, get a role and attend every single practice-all without much anxiety.

When she would get crabby or appear to not be listening to her father and I, we attributed it to everyday stress. When she would explode and have major meltdowns, we guessed that it was the play or even simply typical behavior for a 9 year old. Yes, she wasn't herself but we were blind. Ok, now I'm not sure if we were blind or it was a case of ignoring what was in front of us because we wanted her to be ok.

When she started complaining that she wasn't feeling good at night, for a few nights in a row, we recognized what was happening. The OCD was controlling her again. We had forgotten all about these nightly battles. In the past she would demand that we take her temperature at bedtime because she was convinced that she was sick. When we would refuse to even feel her forehead she would start to meltdown, screaming hysterically. Every night. We all suffered for more than a year until she had started the medicine. Her doc told us that it was the OCD. He was right. On the med, bedtime was wonderful (as long as she has her melatonin).

After she had been off the medicine for about a month she started picking her skin again. She begged me to call the doctor so she could go back on the medicine. I didn't want to give in so quickly. I was still holding onto that hope. It was all about me and I recognize it. We put a rubber band back on her wrist and reminded her to snap it when she felt the urge to pick.

One more week passed by. The rubber band trick was not working. She was miserable. The OCD monster had her in its grip again. It has us all in its grip. The entire house was operating around it. The "thoughts" were back. THE "thoughts". The ones that used to cause us to lock our bedroom door at night.

One morning Paige came running into the living room screaming, "Please call the doctor. I can't take it anymore." The tone and pitch of her voice was something you would expect to hear from someone on fire.

I called the doc, fully expecting to have to fight for her. He didn't want her on the medicine long term and he made that quite clear during every appointment. I sure was shocked when he agreed, without any hesitation, that she needed to be back on it.

It's been a few weeks now and she is doing MUCH better. Gone are the nightly battles. Gone is the counting. Gone are THE "thoughts". She gave in and picked a few mosquito bites but we feel that falls under the realm of normal.

Paige finished her play. 6 performances! Yes, I cried like crazy watching her up there on stage. A real stage!

Homeschooling is going good. I still feel it is the best thing we have ever done for her. Some days are hard but it's getting much easier now that she is back on her meds. I asked her if she missed anything about going to school. Her answer... "I miss getting a new back pack every year." lol

Hubby went away for a week on a business trip. It was only the 2nd time we have ever been apart in the 17 years that we've been together (the first time was 17 years ago). To all of you single parents, I am in awe of you!

So, I'm still here in the blogworld, just have been a bit preoccupied with life. I have been reading everyones comments and feel incredibly proud to be surrounded by so many intelligent, passionate individuals. There was one comment left under the last topic that I will be addressing in my next post. I'm sure it will cause a ripple but I feel it needs to be said. Hopefully I'll be able to post soon, as long as life cooperates.

Thanks everyone!

The Cost of Ongoing Medical Care-Who Pays?

Recently I found a new blog and spent some time reading the back posts. When I came across this post, over at White Coat Rants I felt the need to comment. Specifically it was the following statement made by the blog author that caused me to pause...

"Hospitals seem more and more willing to sue for medical debts. Should hospitals be able to force people into bankruptcy for the medical services that they provide?

A hospital is a business. Without money, the business goes bankrupt.
If you walk into a lawyer’s office, many times you’ll need a retainer or the lawyer won’t take your case. If the retainer runs out and you don’t pay, then the lawyer stops providing services.
If you walk into a supermarket, fill up your basket, and leave without paying, you’ll be arrested for theft.
Stop paying the guy to cut your lawn and you’ll have to do it yourself.
Why do people expect that medical care should be free if they don’t have any money?"

After reading all of the comments, I left one of my own.

"The comments are great and allow everyone to look at the situation from many angles.

I have another one though..

What about the parents of a child born extremely premature? Not only will you have the hospital bill but you may also have on-going medical care for the rest of their lives? What if both parents can’t work because there is no one to take care of the special needs child? Can one person really work enough hours to cover all of the bills?

What if said bills are higher than they would be if they were billed from another department? For example… nursing care is billed at a lower rate in the ICU than it is in the NICU? Is that fair? Should one department be allowed to charge higher even though the same skilled staff is used? Should one department be able to charge higher rates so the revenue will cover less lucrative departments?

What is a person to do? Deny care to their child? Let their child suffer?

Choose not to resuscitate because the parents will not be able to afford the care?"

To which the blog author wrote:

"States have SCHIP programs to help pay for care of children with costly medical problems."

That's when it hit me. People actually believe that the above mentioned program is the answer. Please don't head over to White Coat Rants in anger. The blog author seems to honestly feel that the program is working and helping people.

I, on the other hand, know differently. The program varies by state so my experience may not be the same as others have had. But, that system is broken and does not help all who need it. And, this blog author is not alone in their thinking. I can't even begin to count how many times people have assumed that we had Medicaid because of Paige's ongoing care.

When Paige was diagnosed with Epilepsy (4 years old) we were shocked to find out that our health insurance (which we paid for ourselves at over $1,000 per month) had an annual cap of $500 for prescriptions. Between her new meds and the rescue meds we had to have on hand, we blew through our allotted $500 in under 2 months. I had heard of the Katie Beckett waiver so I did some digging. I called our Medicaid office (in our previous state-Illinois) and was told that Illinois did not participate in that program. We were told that there was a similar program but we didn't qualify because my husband made too much money. But, they refused to take into account the ongoing medical bills that we were paying out, or the fact that we were paying for our own health insurance, which left us without enough money to eat at times. (Many of you have already heard me talk about how we lived on Spaghettios during that time)

When I asked (begged actually) the woman to help us she told us to get a divorse and have hubby say that he lives out of our house. This way his salary would not hinder us from getting help. When I told her that I didn't consider that to be a viable option she told me that many people do it. Her second suggestion was to have hubby quit his job and work at Walmart so we would qualify.

Again, I realize that all states are different. But at that time (almost 6 years ago) the total household income dictated whether or not you could qualify for help.

Hubby ended up leaving his job and taking one with a company that offered health insurance. But, that only solved our perscription problem. We still had the cost of the copays for each doc. At the time she had 9 of them! Add that to the cost of our portion of the ongoing tests and we are right back where we started.

When we moved to our current state of residence, I tried to get help again. Same problem... hubby makes too much money and the state refuses to look at how much you are paying out in continuing care.

And now we live in one of those states that adds interest to outstanding medical bills and sues if you don't pay.

Do I feel that I am entitled to medical care for my child without having to pay for said services? Of course not! It's a horrible feeling to know that you can't afford your child's medical bills.

But, where is the solution?

Again, I want to stress that I don't feel that the blog author deserves all of us running over there and leaving comments that are not helpful.

I would love to hear from everyone here.

Are you happy with the help you receive from state programs? (I have heard that PA is a good state to live in)

Do you have any suggestions for programs that you were able to qualify for and have been helpful?

How do you pay for the ongoing medical bills??

How about your NICU bill? Did insurance cover it for you? (Ours did not cover any meds used off label, which left us with a $75,000 pharmacy bill)

Full Potential

A few months back Chris (Chris and Vic) brought up the topic of "living up to ones full potential". I instantly thought that it would make a great, thought provoking, post. I settled in with my laptop, fully expecting to bang out the words with ease.

"Let them be who they are and find their way. They'll decide what their own full potential is and follow the path." It sounded so simple as I was writing it. Then I stopped to think about what I was saying. Could I really just let Paige follow her own path? Is that what a parent should do?

Does everyone have the ability to realize their own full potential, without direction?

I saved the post and decided to pick it back up again a few weeks later. I stared at the screen in hopes of continuing the post I had started. But, my feelings on the topic had changed. When Paige came home from the NICU I used to say, "I don't care if she shovels sh*t for a living, as long as she is happy." Did I think, back then, that shoveling manure was in her future? Would that be all she would be capable of doing?

So, does ones abilities dictate their full potential?

Life took over and I never finished the post. It wasn't until I received an email, from someone that I met a year ago in the blogworld, that opened my eyes to my part on the path to Paige's full potential. This person is an accomplished specialist and a former preemie. His long term issues are not visible in daily life, for the most part. But, he was embarking on a personal goal in a sport that is rough and he was concerned about his ability in one area, due to one lingering preemie issue. I was so proud of him for trying something so difficult. He never gave up and his perseverance paid off.

In the comments section of a recent post I mentioned that I recently made a pretty big parenting mistake. Paige asked if she could take ballet again. She was in it for a few years when she was 4-5 years old. It was fun watching her dance around and quite the tear jerker for hubby and I during her recital. The year after we moved we enrolled her in a ballet/tap group. She was older now and her limits were quite apparent. She could not properly stretch, nor could dance without pain. She asked to stop and we had no problems agreeing.

Well, jump ahead to the end of last month. Paige asked if she could take ballet again. While she was asking me she was dancing around looking so sweet. But, her limits are really apparent now. She cannot stretch her legs and the tightness in her muscles causes her pain, even when she is not doing anything strenuous like ballet. The kids she would be in class with would be much further along than her. She started begging to take ballet.

(here comes the huge parenting mistake) I told her no. *I* knew that it would cause her pain, both physically and mentally. *I* knew that she wouldn't be able to keep up. *I* knew that she would have to drop out of the class.

But, it wasn't until I received the above mentioned email that I realized my mistake. Who was I to dictate what Paige was capable of doing? Even though I was trying to protect her, was that the best possible way of handling it? I no longer think so.

I learned a lesson, thanks to one special person sharing his concerns and then his triumphs. I still can't decide how I feel about Paige living up to her full potential. I still can't fathom what her full potential may be.

I do know this though... I need to make sure I am not the one who limits the possibilities of what her full potential may be.

Thanks Chris for always making me think.

Thanks LS for sharing your news with me. There was a lesson for me to learn and you opened my eyes.

It's Worth Repeating

I first published this post way back on Feb. 7, 2007. Due to a recent email I received, which I will not be sharing, I will be reposting this entry. I hope it will help the author of the email as well as others who are feeling that they are the cause of their child's issues. You are not alone. If you found your way here through a search, I hope you will also share your story so others will know they are not alone.

****
Invisible Issues Related to Prematurity

Wheelchairs, glasses, feeding tubes, leg braces... all are outward signs of prematurity . If you need services at school, you'll get them. If you go to the doctor, they listen to what you have to say. Neighbors understand why you are tired. Family offers to help.

Advances in medicine and interventions have lowered the number of children who need those devices. For this I am thankful. My daughter does not (currently) need any of the above (although she did wear leg braces for a few years).

But, there is another side to prematurity... Invisible issues. They are clear as day to us parents and the preemies that experience them but invisible to the outside world and largely ignored by the medical community.

anxiety disorders
sensory integration issues
psychiatric issues
behavior issues
fine motor delays
fatigue
feeding issues
weight and growth issues
reflux issues
head aches
autism spectrum disorders
coordination issues
sleep issues
severe constipation

Over the years I have heard many parents say that they were blamed for the above issues.

I am also one of those parents who was blamed. For a brief moment I believed it. (I must not be feeding her enough, I must be babying her, I am not strict enough, etc) But, as I started talking to other parents I realized that other preemies were suffering with the same issues.

If you are thinking, "these issues are not that bad" then you have never lived with a very young child who stabbed herself because her "thoughts" told her to. You have never lived with a child who has such severe constipation that, despite adult doses of Miralax, can still tear herself bloody when she has a bowel movement. You have never lived with a child who will drop to the floor and scream when hearing a voice on the loudspeaker. You have never lived with a child who will cry because she is so tired that she cannot run with the other children.

These invisible issues are what makes me continue to fight to get the word out. Why should any parent feel responsible, like I did, when the above issues are actually commonly reported by parents of preemies? Why should I stay quiet and let the doctors feel that preemies are fine after age 2? How will conditions improve? How do we expect the doctors to know?

I've been told that my posts sound angry. Since true emotion can be misunderstood, I want to be very clear. I am not angry. I was the one who chose to have the doctors save my daughter. As it stands right now, I cannot look at my daughter and honestly say that I would choose differently.

Frustration is the emotion that I feel. Frustration that misinformation is still the norm when it comes to preemies. I feel an incredible sense of duty to be a voice for future preemies and their parents. I am thankful that I am not alone in this passion.

More on Mental Health

Some of you may have heard about/read a recent news story about Terri Stimmel, a woman convicted of killing her roommates cat.

You may read the story and be shocked by her actions.

I, on the other hand, read that story and was immediately saddened by the fact that she had not had proper mental health help. The story quotes her as saying that she had "uncontrollable impulses". Could it have been OCD? Another issue? Could it have been prevented by medicine and counceling? (Both of which she is currently receiving.)

Fortunately she is finally getting the help that she deserves.

Unfortunately animals died, the owner of the cat is suffering and Terri's life will never be the same. She is painted as a monster but no one is addressing the real issue...

Our health care system is failing our most vulnerable people... those with mental health issues.

There is one fact (among others) that was left out of all of the news stories about Terri.... she was born premature. Yep, yet another former preemie with mental health issues.

I have been very open on this blog about Paige's struggle with anxiety and OCD. She has hurt herself, hurt her brother and had thoughts of hurting her father and I. She makes innapropriate statements in front of others. She has thoughts that are too scary for me to mention here. All because of her OCD "thoughts". There are times when I want to crawl in a hole, bury my head in the sand, deep below reality and never talk about it again.

Then I get letters from other adult preemies who thank me for being honest. They need to know they are not alone. The letters from parents of kids, who are the same age as Paige, hit me hard too (although I wholeheartedly appreciate each and every one of them).

The kids are hurting. Families are hurting.

Who will take care of our kids when they are adults and out on their own? When we die? What happens if they can't afford mental health care? What happens when they can't work because of mental health issues?

Our kids WILL grow up. There is an entire group of kiddos who were saved at the edge of viability who are now having issues like Paige.

Will the system be there for them?

It sure isn't there now. It wasn't there for Terri.

"When is my next test Mom?"

Below is a conversation between Paige and I while she was in the chair, at the dentist, waiting for the numbness to take effect, to get her tooth pulled.

Mom, when is my next test?

What test Paige? (thinking she was talking about homeschooling)

Any test.

(I paused to think) Hey, guess what? You don't have ANY tests scheduled. Wow, that must feel good.

But what about my EEG's?

You don't have one scheduled.

But I'm supposed to have one every year. The last one showed spikes.

Paige, they always show spikes. Remember the doctor said that they would always show spikes but that doesn't mean that you are having seizures. He said that we didn't need to come back unless we thought you were having seizures.

What about my blood tests Mom? Or my MRI's?

Nope. You don't need any.


But what about...

Honey, you really do not need any tests right now. You are doing great.


The dentist walks in. She tries to pull Paige's tooth but Paige ended up needing more novacaine (or whatever "caine" they use now). After 4 or 5 shots Paige is finally numb. The dentist struggles to get the tooth out (it was a back tooth that had such a bad infection that even a pulpectomy didn't work). Paige never struggles or cries even though the dentist really has to work the tooth to get it out. The dentist looks concerned but finally gets the tooth out. The dentist was visibly shaken. I wanted to cry. I have seen Paige endure a lot of medical procedures but this was harsh. Her little head was really being thrashed. Her small mouth was stretched so wide. It was horrific. But Paige remained calm.

The dentist leaves the room. Paige tries to sit up and her entire body starts to shake. Her eyes roll. This lasts for less than a minute. She whimpers, "mom, why am I shaking?". A few minutes later she sits up like nothing happened. The dentist came back in with Paige's tooth, all cleaned up. Paige spends a few minutes examining it with great excitement and then hops out of the chair and skips to the waiting room. While I'm making her next appointment (to get her spacer) she yells from the waiting room...


Mom, you forgot about my eye test. See, I knew I had a test coming.

When we got home she curled up on the couch for a short time but then decided to get up and play with her cousin. That was it. Through all of that trauma she only needed a few minutes to rest and she was fine. It was a huge tooth. But the trauma was all ours (mine and the dentist).

After we put the kids to bed I fell apart. Sobbing uncontrollably. Poor hubby didn't know what to do since I'm usually a rock when it comes to her medical procedures. I've had to be that way.

It was then that it hit me about my conversation with Paige. I was feeling so overwelmed after watching the procedure but also feeling overjoyed that we didn't have a test scheduled. This is the first time in 9 1/2 years that we don't have an upcoming test or procedure. The first time that I don't have to prepare myself to watch my baby be stuck with a needle or jammed with a tube.

So why was she troubled by the lack of medical intervention in her life? You would think she would be relieved. To be honest, she is never stressed when she has tests (barium enema excluded) but you would still think that her joy would match mine. Actually it should have been greater.

But, it's all she has known.




(For those who have known us for awhile and remember that the docs said she may very well have orthostatic intollerance... hmmm do we really need a tilt table test now? I think her reaction after being sat up in the chair says it all. Who needs an expensive test. lol)

Researchers Link Premature Birth To Emphysema

While this study only included a very small sample (21), I feel it is worth mentioning.

http://www.reuters.com/article/latestCrisis/idUSL9310544

"A small study of 21 infants born up to four months prematurely in the 1980s and weighing as little as 0.6 kilograms showed that by the time they were young adults all had lung problems, including 84 percent who showed areas of emphysema."

"The young adults in the study were born between 1980 and 1987 and were dependent on supplementary oxygen for more than 28 days during their stay in the hospital."

Anonymous Asks....

I received an email from a parent who is asking for guidance and information. This parent has asked to remain anonymous. I hope everyone will take a minute to read the post and see if they have any suggestions, as they have in the past. I have already sent a response to the parent, which you can read in the comments section.

******

I'd like to know if it's too early to make an independent decision to take my son to a neurologist. He is a 22 month old 27 week preemie who weighed 980 grams at birth. His apgars were 0 and 0 at all intervals - and the hospital spent 45 minutes resuscitating him. He is currently in the less than 3rd percentile for weight and refuses to take a sippy cup or eat decent quantities of solids. He seems to have some sensory issues, i.e. won't take our hand when walking, must get down on his knees to move from a 1" thick mat to the floor.

He was recently assessed by a developmental group and received the following scores:

Bayley Scales of Infant Dev II

MDI: 107

PDI: 73

Classification: Mental 18-19 months, Motor 16 months

Receptive Expressive Emergent Language Scale-3

Receptive Language: 12 months

Expressive Language: 15-17 months

Rossetti Infant Toddler Language Scale

Language Comprehension: 12 months

Language Expression: 17 months

No one has interpreted these results to us, though I have found some information on the Internet regarding the Bayley PDI score - with the mean score at 85 and mental retardation at <70.

Our speech therapist insists that he isn't anywhere close to mental retardation, but his score worries me. When I asked the gal doing the assessment if I should be concerned, she replied, "Nooooo. He's just going to be a 'different' kind of learner." I have NO idea what she meant by that!

Long story short, I'm wondering if it would be effective to move forward and see a neurologist who specializes in preemie development. Or, should I just wait until he gets older for a more valid assessment?

THANK YOU for all that you do with your blog, especially when you share your own personal stories. I cannot tell you how much you have helped us!

Dear Sarah,

This post has taken me a few days to type. Honestly, my extreme emotions have taken me by surprise. As you well know, I am never at a loss for words. But, since we first hugged on Tuesday my head started to swirl.

It took me a few days but I have finally figured out why. Whenever I am face to face with people, I tend to be guarded because Paige speaks before she thinks. Imagine how stressed I should have been. Paige in a hotel filled with blind people. I was waiting for her to start asking everyone what medical condition caused their blindness. She has been known to walk up to complete strangers and start asking questions.

But, from the first moments of our time together I felt safe with you. I knew you would not judge us if Paige let her curiosity show. Safety. What an incredible gift you gave to me Sarah. What an incredible gift you gave to Paige. She asked questions, you answered. You never made her feel bad for wondering.

Within minutes we were all laughing. Paige was completely drawn to you and your incredible spirit. So were Jason and I. So were many others. Your helpful nature came shining through.

During the ride home Tuesday night, I was already looking forward to our Friday visit. Paige didn't stop talking about how much fun she had and how much she loved spending time with you. But, it was then that I realized how much this world needed to change. That's when my emotions got out of control, very quickly. Our trip to Target was a huge step into your reality. Before that day I never even thought twice about many of the restrictions that you face on a daily basis. You are so amazing. You make it all seem so easy.

Friday came and I was so excited to be spending the day with you and Kevin. With my crazy emotions in tow, Paige and I practically ran down the hotel hallway to your room. Before we even got there we could hear your laugh. Paige smiled really big.

She had a blast that day. From playing with Loretta, getting to go with you to try out the possible currency options, seeing how your computer works, listening to your music, and even being turned into a blind child. She loved it all.

She learned some pretty hard lessons that day too. Seeing the reactions on the faces of sighted people was very difficult for her. But, being that she was in the safe environment that you created, she was able to learn from what she saw.

Sarah, I am forever grateful for the time we spent together. You are an amazing woman. I know you won't agree with me when I say that you are one of the most courageous people that I know. You would tell me that you are merely doing what has to be done. But, there are plenty of people out there who would never venture into unknown territory like you have done. You are an inspiration to many.


I could not end my letter here. There are a few more people that I need to mention.

Michelle,

I really enjoyed getting to know you. You had no idea about this but you said something to me that brought tears to my eyes. The first day we met you said that you liked my blog because I "tell it like it is" and you were glad that I was out there talking about the issues. You have no idea how much that meant to me to receive such validation from a former preemie. I can't thank you enough.

I had so much fun spending time with you on Friday. All that laughing we did while walking the dogs was wonderful! You made us feel so welcome. I look forward to reading your journal and getting to know you better.

Kevin,

Oh where do I begin? You are one very special person. You are one of the most open minded people that I know. You treated me with respect after finding out (thanks to Paige's openness) that our religious beliefs are quite different. That's a rare quality nowadays. I really enjoyed our lunch chat! Oh, and your sense of direction... could I borrow it? If it wasn't for you, we would have gotten lost on our return trip from Target and our walk back after lunch. I sure will miss your sense of humor too!!

With much love to all of you,

Stacy

OCD and My Thin Skin

First off, I am thankful to those of you who have stuck around. It has been a crazy time in our house. Between doc visits and out of town guests, we all haven't slowed down since school let out at the end of May. I am going to be around much more now that our chaotic life is calming down a bit.

Now on to my good news...

For those of who need to be brought up to speed: Our daughter has very severe OCD. Her compulsions have ranged anywhere from counting objects, harming her brother, breaking things, all the way up to harming herself. Her most recent battle has been skin picking, which has been going on for over a year. Her psychologist worked with her and finally suggested that we see a pyschiatrist for meds. It took quite some time to find the right mix. She ended up on Zoloft and Resperdal. Her psychiatrist only wanted her on the Resperdal for a short time but she has been on it for almost a year because the skin picking was out of control.

At the worst part of her ordeal she had over 100 open sores. We really thought that she would never be able to stop. Medicine wasn't helping, cognitive behavior therapy wasn't helping, rewards weren't helping... nothing. Then she was getting ready to go on an overnight trip with Girl Scouts and we were afraid they may not let her in the pool because of the sores. She fought her OCD very hard and was able to stop picking long enough that they open sores turned to scabs. She went on the trip and had a blast.

Well, her psychiatrist was now convinced that there had to be some sort of congitive behavior therapy that would work. He had us go back to her previous psychologist and ask her to work with Paige.

The psychologist gave Paige a rubber band to wear around her wrist and told her to snap it whenever she felt the urge to pick. I was very leary because Paige likes pain. I was worried that she would snap the rubber band excessively, causing welts. The psychologist said that it was ok if she caused pain. She said that Paige has to replace the pain felt during skin picking with another pain, in order to surpress the compulsion.

At the start of the program Paige had over 40 open sores (and over 100 scabs).

It's been about 3 months now and I am thrilled to report that she only has 4 scabs! They aren't any open sores!! Only 4 scabs!!! We are so proud of her. We are seeing her compulsions come out in other ways but they are not harmful and they are quite manageable for her. They best part is that she is proud of herself too. We are headed to the psychiatrist this week. He will be so proud of her too. The next step will be weaning her off the Resperdal. Please wish us luck! We've heard some horror stories about the weaning process.

Now on to my thin skin...

I have been jumping out of my skin with excitement over Paige's amazing accomplishment with her skin picking. Since I hadn't had a chance to post the good news on to my blog, I had quickly mentioned it on one of the on line groups I am on. I had planned on posting a quick update on my blog the next day but then I got suckerpunched. I received an email from someone telling me to read the post of a fellow blogger. A fellow preemie parent blogger no less. My jaw dropped when I read the post. This blogger was basically saying that OCD was the fault of the parent. I felt it was clearly directed toward me since it was me who was just talking about Paige's success.

My skin has thickened over the years. Between my strong feelings about comfort care and my lack of belief in a supernatural being, I have been called lots of names and been in the middle of a ton of controversy.

But, for some reason, hearing people say that Paige's OCD was my fault knocked me on my butt for a bit. I never saw it coming. I shouldn't have let it get to me, but it did. I remember walking away from the computer, head about to explode and there was Paige, right outside of my door crying. She was devastated because of the permanent scars her skin picking had left on her arms and legs. I was devasted too. Her skin used to be so beautiful, like a porcelin doll. Now her skin has hundreds of scars. As I hugged her on the floor I thought to myself, "how could someone be so hurtful and accuse me of being the cause of this?"

A few days went by and I was still devasted. A few more days... still upset about it. A week went by and I was still thinking about it. I was beginning to think that I would be stuck in that funk forever. In that dark time I received a few emails from people who saw what happened. I will be forever grateful for those people because it was their notes that pulled me out of the funk.

I always knew it wasn't my fault but it still hurt. Foolish me! I actually chose not to update my blog with the good news because it would look like I was retaliating against my fellow blogger. Boy was I being childish! Never again will someone rattle my cage that way again!

Pain Response in Preemies

"Methods commonly used by doctors to assess pain in infants may be underestimating the amount of pain they feel, according to a study by UCL researchers."

http://www.ucl.ac.uk/news/news-articles/0806/08062402

Taking a Small Break

I just said good bye to one set of relatives who were visiting from out of state (hadn't seen them in 24 years!) and now I'm getting ready for another set to roll in (who will be here for a week).

I'll be back in a few days with an OCD update and will answer emails and respond to comments then.

I hope every one is safe from all of the nasty weather that mother nature has thrown our way.

Calling All Vomit Experts

I need everyone to head on over to Liz's blog and help her out. There is a video of her daughter vomiting during eating. The docs are out of ideas. I know it's a lot to ask, but if you have ideas and reach out to Liz, please also post it here. My site meter always has hits from people searching for help for their vomiting preemies.

http://lizmccarthy.blogspot.com/2008/05/please-help-solve-our-vomit-issues.html#links

(I think the link will take you to the bottom of the comments. Please scroll all the way up to read her post).

Here is some additional information, from Liz, about her daughter.

Hi Stacy,

Thank you for your reaching out, after yet another day of pghelmy vomit, I
am about ready to throw my hands up and give up (yeah right, how can I give
up).

To answer your questions and more too, (as others have asked me too via
comments on my blog): (I think I'm going to put this in my blog too)

-No nissen, we've refused. The GI has been ok with us not doing one, as K
has gained weight on her own little nice chart (albeit with a LOT of work on
our part making up for the vomit). I truly believe this will not help her.
I know with a Nissen she would continue to gag and get phlegm - it will just
stop the vomit from coming up, but isn't going to solve the problem of the
phlegm

-Her left vocal chord is paralyzed

-She has her tonsils and adenoids (never been looked at), as I hate having
her scoped as she is already so oral averse. Does not have ear tubes.

- had 2 ear infections this year and 2 last year, minor ones.

-she is a very good pooper, never been constipated, EVER.

-She used to vomit up to 20x a day when gtube fed, she was fed 10hrs
straight at night without vomiting mostly.....she could only tolerate breast
milk, any formula and she vomited at night too (this was donated breast milk
so it wasn't "dairy free diet" breast milk. Because she never/rarely
vomited at night, I've always believed that she didn't have a milk issue.
It's when she's awake that causes more problems. As an infant she slept on
in include. NO longer, and was tube fed (BD) laying flat with no problem
whatsoever.

-We had tried all the hyper allergenic formulas at one time or another, and
no reduction in vomit.

-she recently (5 mo ago) tried a goats milk only diet (no cow dairy) for 2
weeks, with no difference in reduction of phlegm

-when was RAS allergy tested, no milk allergy shown

-never had any other signs of allergy (no blood in stool) no rashes (except
for some recent eczema on her feet and ankles)

-I just set an appointment to see an allergist (which is months away)

-it was when we switched to a BD (Blended diet) that her vomiting finally
got under control 2-3 times a day and we could much more rapidly give tube
feeds and we even were able to get rid of the night pump. We still gave her
last BD feed after she went asleep, but we finished by midnight, and she
never vomited. Her BD is milk/yogurt based, (again, remember at night we
could feed her BD asleep with no issues of vomiting and she was lying flat)

- Her vomits are now one of 3 types: - phlegm induced (she tries to clear
her throat and ends up emptying her stomach), gag induced (she's a horrible
chewer and often swallows food whole which results in a vomit) or
occasionally unannounced reflux type vomit (just comes all of a sudden, but
this is VERY rare).

-She's been on prevacid solutabs for almost her whole life (after zantac
didn't do anything, nor did prilosec), then again, we never saw any
difference with prevacid either (no reduction in vomit, I know, PPI don't
stop vomit, just reduce the acid)

-I took her off prevacid about 3 months ago, and felt strongly that her
phlegm seemed to decrease. I just started her back on it again, as I'm
afraid of the damage to her esophagus/teeth from the vomiting., but I happen
to strongly think that it's increased how much phlegm she is dealing with.

-we tried a few weeks on Periactin and went 3 days without vomit and hardly
any phlegm (first time EVER), then she got sick afterwards 3 times back to
back, so we haven't tried that again.

-she now eats 100% orally, only purees and doesn't "like" to eat, especially
when she has all that phlegm in her throat (for obvious reasons) Not a good
chewer, although she tries to chew meat, it takes forever, and for us to get
calories in we have blend her food

-her lungs are doing quite well all things considered, she doesn't have
asthma, has never had pneumonia since leaving the NICU (which typical
refluxers get a lot of pneumonia) (although has had some serious colds that
go into her lungs - one time bronchitis) and has had oral steroids a few
times.

-she never writhed/screamed with eating like you think of "typical"
refluxers, not signs of being uncomfortable except the refusal of eating.

-She was on reglan upon first coming home from NICU, no reduction in
vomiting, stopped years ago.

-we've tried Claritin for 3 days in a row with no reduction in phlegm/vomit.

Here are my ideas:
- She needs something to stop the production of phlegm. I think I'm going
to take her off prevacid again and see if we get a reduction in phlegm like
I think I did last time) as a trial. I'll put her on zantac to reduce the
acid damage to her esophagus.
-now that she's not sick any more I'll put her back on periactin
-contemplating trying Domperidone (which I know isn't legal in the US), but
my thought on Dom is that it is supposed to speed up processing time of
food, don't know if she needs this but I've heard form quite a few other
moms that it was a miracle worker for their vomiters.

OK, I just posted all the above on my blog too!

Thank you my dear!

Liz

Those Years Are Gone

Under my post "Guilt Revisited"

Future of Hope wrote:

"Anyways.... My guilt hits me full force whenever I look back at my son's early years. All of the time spent focused on this milestone or that, pushing and prodding for just "one more" skill, all the time spent running from PT to OT to SLP and back again. I would give literally anything to go back in time and get off of that merry-go-round. We lost so much. So much fun, so much "bonding", so much discovering and play. All in search of what was "supposed to be" instead of "what is". If he hadn't spent so much time pushed beyond his limits, would his social/emotional outlook be better? I missed so much that can't be gotten back - so many "firsts" that came so late that they brought with them more anxiety than joy. I was so wrong. I want my baby back. NOT my "preemie", not my "special needs child" but my BABY. the one that I had in my arms, and that I dreamed away."

Not one day has gone by since I first read her comment, that I haven't thought about the emotional impact of her words.

I have often thought back to the beginning years of Paige's life. We had various therapies 4 days a week, for her first 2 years. Physical therapy (twice a week), occupational therapy, speech therapy. 4 days a week of people coming out to our house to tell us all of the milestones she was not reaching and how to help her reach them. After 2 years, the time spent in therapy lessened to 3 days a week and we then saw the therapists at a pediatric therapy facility. It continued this way (some months increasing the amount of visits) for the first 5 years of her life.

Despite all of this therapy Paige still sat up late, crawled late, walked late, talked very late, has tone issues, fine motor issues and has severe sensory issues.

Looking back, do I feel that therapy was beneficial? No.

It was not beneficial for Paige but it was beneficial for me. I felt that I was doing everything to help her. How can we turn away services that are supposed to help our child? After giving birth to a preemie, is any parent in the right emotional state to ask questions as to the efficacy of therapy? I know I sure wasn't!

I have met a few parents who did not put their child through therapy. I fully expected to see a child who had not progressed as far as Paige but this is not the case. All of the children that I have met, who did not have therapy, are exactly where Paige is at... tone issues, fine motor issues and sensory issues.

I've always been upset about how much Paige (along with her Dad and I) had been put through for 5 years, only to be exactly where she (most likely) would have been without therapy. But, until reading the comment left by Future of Hope, I never realized how much I lost.

I'm writing this post so we all can openly discuss the early intervention services. I want new preemie parents, who are desperately searching the internet for information, to know that they have a choice regarding therapy. I don't want to sound as if I am criticizing those in the therapy fields, there is a place for them. But, what I really want to know is how others viewed their therapy time.

Eczema or Ring Worm?

I noticed this round rash on Paige's arm tonight. It looks like both eczema and ring worm. Does anyone have any experience with this? I don't want to put steroids on it if it's ring worm because it will make it worse. Since Paige skin picks (due to her OCD), I surely don't want to make it more noticeable to her. But, I don't want to assume it's eczema and have it be ring worm, which is very contagious. I hate to keep her home from school since there is so much end of the year fun stuff going on.

So, any thoughts? Anyone?

A Zoo Day

Nope, not this zoo.

A few weeks ago we headed to our local zoo. I have to admit... although we have a membership, I'm really not sure if I like the concept of a zoo. The idea of animals being kept in captivity bothers me. But, the idea of using the zoo as a teaching tool has me coming back. My husband and Paige will gladly tell you how I go on and on, the entire time we are there, about animal rights. Honestly, it's amazing what they will put up with in order to go see the animals. hehe

The first time we went to this zoo (when we had moved here-3 years ago), and I walked into this exhibit, I cried. It just doesn't seem right.

Now, 3 years later, watching Paige and Tyler with the Orangutan, I cried all over again. It still doesn't seem right.



Paige's favorite animal has always been the giraffe.

This zoo has quite a few peacocks. Paige loves to get up close with Daddy while he is taking pictures. Notice how far away I am. There is something that most people (unless you have been with me outdoors) do not know about me. I am TERRIFIED of birds. I know it's silly and I've tried telling my brain how ridiculous it is acting. But whenever I see a bird (or a duck, peacock, bat) that lovely fight or flight switch gets flipped to flight. Maybe it has something to do with the fact that I was attacked by ducks when I was little.

Hubby, however, has absolutely zero fear. Apparently the peacock doesn't have any fear either. He did not use the zoom for this shot.


This peacock speaks "Paige". She asked it to open its feathers and it did. She got a huge kick out of it.


Tyler, on the other hand, could have cared less. Yikes! We've been busted. He just turned 2 and he still has his pacifier. Any one have any tips on how to get rid of it that doesn't involve tears (from me or Tyler)?

We were able to take it away while he was on the zoo playground but he ended up putting the wood chips in his mouth. I vote for the pacifier instead.

From dragon slayer....

to princess. She has the wave down pat.

So, what happens when you have a husband who missed his calling and should have been a photographer? (At his real job he designs high end home theater systems for installers, which he loves)


After a day at the zoo you end up with a memory stick full of flower pictures. (below are only a few)





I'm not complaining though. He gets the coolest shots.


It was such a beautiful day. We all had a great time, especially Paige.

So, why is she running away?


It was time to go to the gift shop! Shopping trumps everything in Paige's world! hehe

**********May 19th update*********
Tyler fell tonight, face first on the kitchen floor. Below is a picture of his boo boo. You can see the outline of the pacifier on his face. I was hoping that he would refuse his pacifier because it would hurt to suck on it but... no such luck. Side note... his hair looks that way because I took a cool washcloth to his face in hopes of holding down the swelling. When I looked at the pictures on the computer, his hair looked greasy. I promise, my kids are clean. hehe