Nothing

I know its great that the tests and biopsies are all normal but we still don't have any answers. 2 tests are still pending but we were told that because everything else came back normal there is little chance that anything would show in them. So its like where do we go or what do we do from here????? The thing is he is having mini like stroke episodes are they strokes or are they seizures? At the same time do I want to know if my child is having mini strokes versus seizures? Its the same thing we all wonder what came first the chicken or the egg.

We told her about the cycle he seems to go through with the vomiting, low O2, the high and low heart rates, his inability to pee, constipation even though he does move his bowels. Even she mentioned autonomic issues.

So the next thing is an MRI of his brain to check out all the blood vessels to see if they are mini strokes he is having. Its like the dog chasing after its own tail we seem to be going around in circles too chasing I don' know anymore. We also have to go back to the movement Doc it looks like he might need an adjustment on the med for his dystonia. I suppose its good that they don't want to do anything to his seizure meds but he is still having seizures.

Wow I haven't updated here in a few days

Well the good thing is Finnian has stopped throwing up but now he is either destating on his O2 or his heart rate its either topping off over 200 at times or else its dropping down below 60 and setting the alarm off.

Saturday we went to the Botanical Gardens it was a nice cold sunny day. They have the Orchid Show going on there now. Got some nice pictures of the pretty flowers. We also took the tram ride around the gardens. It was the first time for both Finny and myself on the tram. Its was very cold by the time we got off the tram and then we had to walk home. Saturday was also Purple Day to support Epilepsy. Yup Finny , Maurs and myself had our purple on.

Sunday was a normal day for us not much going on.

Monday we were back to normal what ever that really is I don't know. Heard back from the GI doc he would still like Finny to have to surgery on his belly but I don't know as he passed the tests on his belly. Yeah I know my kid throws up a lot but its not going to stop him if its brain based. Still waiting to hear back from the Ortho to see when they are going to take out his hard wear.

Wednesday is a big appointment we will see if they found anything from the biopsies and the other tests they ordered. Will up date when I know anything

Crappy weather

You know yesterday we had very weird weather. One minute it was raining next it was snowing and back to snowy rain. But the really weird part was around 8 pm when there was thunder and lightning and it was snowing at the same time. What happened to Spring?

Finnian was a really floppy boy to the point when you would pick him up you had to cradle him like he was a new born. The cause of it? The wonderful weather and seizures.

Maura had her little party at school yesterday for her birthday. I made cupcakes don't get to excited it was just the box mix I used. You know I used to make all that from scratch once upon a time but not any more. Now when we know visitors are coming I just run out and buy some biscuts or cake its not something we have in the house. Oh well.........

I just hope we get some nice spring weather back again.

Remembering a Precious Angel

Jordan Emily Rowe

December 30 2005 to March 23 2009

The reason for the purple background

March 26th is Purple Day for Epilepsy. So it would be really great if everyone could wear purple to show your support.

SO REMEMBER SATURDAY MARCH 26th is PURPLE DAY for EPILEPSY. WEAR PURPLE.

We will be wearing purple to support Finnian and all his friends who suffer from Epilepsy

You know I was a lucky girl I got to have a good nights sleep last night. Now its back to the normal night up with Finny's alarm going off letting me know his O2 is on the low side. Its something I figured would happen after all the little seizures he was having yesterday(Tuesday). Well at least he is not throwing up and is back on full feeds. Now we just have to get the weight put back on again. It never fails as soon as he gets a few pounds on he can lose them as fast as you could snap your fingers. He is just so much like my mother in that way but then again he is the cut of my mothers side of the family.

When we picked Maurs up from school yesterday Finny's alarm was beeping his O2 was a bit on the low side so you know I just fixed him up better and it stopped. The next thing its beeping again and I look and his O2 is 82% so I just pull out the oxygen and hook him up and his machine kept beeping. The 2 other ladies that were with me wanted to know if they should call 911. I told them "not at all we will just go to plan B if we need to" Plan "C" is call 911. I figured that something would happen as he had been having a lot of small seizures but not enough to give him a rescue med. The weather is crazy again Spring came and left really fast we are supposed to have snow again today so we will just have to watch our Finnian as the snow sometimes sets his seizures off like crazy. It was funny I told Maura the other day to put the snow boots away and I nearly put the sleds away but you know I will just leave them out you would never know the kids just might get to use them again.

Happy Birthday Maura

Eoghan with his new baby sister
All dolled up
Look at that serious face
Eoghan and Maura
Playing on the bed
Sassy girl
I love this picutre
Look at that ham
Maurs and Finny
Ireland 08
Inish Mor with Daddy
Maurs and Finny in his bed
Chilln' at the Gardens
Making Finny go wheeeeeeee
Another one of my fav's
School pic
At the Gardens
Snow fun
At the Gardens with everyone

Happy Birthday Maura.

Man Colds

Why is it when a grown man gets a cold he is dying and no one else has ever in their entire life has had one as bad as them? Believe you me I will take a screaming, sleep deprived child that is throwing up all over the place over listening to my wonderful hubby complain about his stuffy nose. You know its funny I can handle just about anything but having a hubby thinking he is dying just because he has a cold.

Joe you are such a pain in the arse when you are sick but I still love you

Happy belated Saint Patrick's Day

I don't know what happened that I didn't put up my Saint Patrick's Day wishes yesterday. So Happy Saint Patrick's Day.

My day started very early well QVC had their Saint Patrick's Day special with all the Irish jewels, Irish jumpers, china, Waterford crystal etc. So I was watching that from midnight up until I had to take Finnian to see Dr.C the pulmo doc. We got new oxygen orders, he can have up to 4 liters of O2 now when needed. We discussed that maybe some of his issues are seizure related. The only reason I can come up with this is on 2 occasions we have noticed that he is on O2 because he is not keeping his stats up and then we see physical seizure involvement that doesn't stop on their own we have given him diastat to stop the seizures and low and behold his O2 levels have come back to where we can take him off the oxygen. The one thing you have to know both times we have given him diastat while he has been on O2 is with the phone left ready to call 911 as diastat can suppress breathing. So then why does his oxygen levels come back to normal after we have given him diastat? The only this is that maybe he is having seizures in around the area of the brain that controls his breathing and once they stop everything gets reset. So if that is the case then the same might be true about his peeing issues which we always see right before a certain seizure, the same with his heart rate and who know maybe his throwing up issues. May be I find it easier to blame everything on the seizures or maybe I should wait and see what all the last round of testing they did on him says? Naahh I thing I will just blame everything on the seizures.

Support ? All you have to do is ask

You know I hate when you ask someone "do you need help?" and the answer is "Oh its fine you don't have to worry we have it all taken care of ".Then you find out differently that they have been basically floundering like a fish out of water. The way they deal with it "I'll do it tomorrow" and then it turns in to days, weeks, months.

NO ONE has to do it alone there is always someone there. You know all we can do is offer to help but when you keep pushing us away DO NOT THROW IT BACK AT US THAT YOU HAVE HAD TO DEAL WITH IT ON YOUR OWN because that is not the truth.

You know we all have our sob story and how unfair things are.I have a 6 year sob story that people cannot fathom how I can smile and look positive about life. You have no idea how some days it was hard to plaster a smile on my face but I did. You know how I did it? I looked for help to understand. I have a great support system from some of my family some others cannot get their warped minds around the idea that there is a child with special needs so they chose to ignore him. I have a great support system with people all over the USA, Canada,Ireland,England, Germany and many more places. They are my warrior friends and no matter what time day or night there is always someone there. These are people I will probably never get to meet in person but through the internet they are there for me and they know and understand how and what I am going through.

You know the first step is to admit you need help. The second is to ask for help. The third is there is always someone there to throw out the life preserver in the form of a helping hand and they will not judge you as to why you need the helping hand. The fourth is to accept the help.

Don't ever say " you don't know what I have been dealing with" because there is some one else out there that has it much worse but the difference is they admitted, they asked, they grabbed that life preserver and most of all they accepted the help given. They are not failures they are the strongest people you would or could ever know because they didn't let their pride get in the way.

Updates

Well Maura came out of school on Monday and said she felt sick and had a pain in her head. All I was thinking "Ok she has the bug and its going to get everyone in the house". She didn't throw up and on Tuesday she looked sick but didn't have a tempature but then the coughing started. Wednesday the cough was getting worse and by the evening she had a cough with a honk so we all know what that is croup. Took her to the docs on Thursda and all he could find wrong was the croup so she is on some oral steroids for a few days. Thankfully we have not gotten that bug that is going around.

Finnian is having so off days but with the way the weather is I cannot blame him. Today he was drooling up a storm and that usually means seizures of some sort going on. He has his ortho appointment and we just have to call to set up his surgery to get his hard ware removed form his hip and legs. They said everything looked great. The doc wanted to know how his seizures were doing and I just told him I will let you know the day of the surgery if he needs a bit extra of meds to help him.

Eoghan got his progress report and math and social studies are not good. The teacher keeps saying summer school if that's the case then he cannot go to Ireland with Nanny. So he knows what he has to do in order to go jack the grades up.

Thats it

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring with experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Happy Birthday

Happy Birthday to me. Some pictures from when I was little many, many years ago.

It was funny this morning Maura was telling everyone that it was my birthday and she was also telling everyone my age. Well its no secret I am 40 years old. you know its just a number. The one thing there are days I do feel my age but thats from lack of sleep.

Didn't do anything special today just got a few books on my nook well its Friday and they have some freebies on Fridays. Joe didn't call me before he left for work so my day didn't start off to good. I was supposed to pick up Eoghans donuts from Dunkin Donuts between 6 & 7 am it wasn't until Nanny called to see why I hadn't stopped over to pick up the zip lock baggies at 6:45am thats when I woke up. There was a bit of a rush so Nanny and Eoghan went and got the donuts. Nanny to the rescue. Got everything bagged up for Eoghan and he took them to school for his party at school.

The one thing Finnian had a GREAT day. I love the good days. It was wonderful to hear him sing and we even heard new sounds from him. That has not happened in a long time the new sounds. He is also awake a lot more but then again he always is on the good days.

Happy Birthday Eoghan

Happy Birthday to my big boy Eoghan. Wow its hard to believe you are 11 years old today.

Happy Birthday Eoghan...

Wednesday

You know when we left the house this morning for Finnian's Gastric emptying scan I sure didn't think we would be at the hospital all day. Yup we were there from 8:50am and we left the hospital at about 2:05 pm. This was a different scan than what he has had done before. The last one he was still able to drink from a bottle so they just mix some of the raido active stuff in with his formula.Then they took a series of x-rays. THis time they wanted to know if he could eat egg, oatmeal or drink their formula. Well sorry Finnian doesn't take anything by mouth and it would be hard to get egg and regular oatmeal down his tube and forget their formula. He is on keto formula so the only options they had was use his formula or use the diet ginger ale we also had with us. We had to be careful as they had to give him a bolus with the stuff and he has been throwing up a good bit so we could only give him 60cc's safely they would like to have given him more but I was just so afraid he would throw up with the "stuff" and I was afraid that he would aspirate it. They give him the mixture and then he was in a machine for an hour with his stomach being scanned the whole time. Then he had to wait an hour and he was scanned again but only for 15 mins then for another 5 mins. THen we had to wait for another hour and he got scanned again. But then we found out he has to go back again tomorrow to get scanned again for another 15 mins. Over all Finnian did great while there as he slept basically the whole time he was there. Well lets just say he was partying all night on the couch so I guess he was a wee bit tired I know I was. I hope that the stuff will be well gone down in his digestive system tomorrow when he gets his scan done.