Hoping for a Great 2011

So I hope everyone has had a wonderful christmas this year. We had a great holiday this year. Noah is still progressing with this new diet and things seem to be moving foward. We went for his follow-up appt last week and they were happy with his progress. We are still having a small amount of siezures but not many compared to what we were having. He has had ear infections and a head cold so this has brought out some siezure activities. But all in all they were happy. I did get a phone call on Friday from the nurse stating that they found some calcium in his urine culture and want us to increase his potassium medication to help with this. He has gained weight weighing in at 29lbs 9 oz. (Daddy wants him at 30lb by the new year, LOL). And is 38 inches tall.

It was a stressful holiday season this year for my family and myself. December 7th we lost a great man in our family. My grandfather passed away. It was a hard loss for me to go through but we all no that he is watching over Noah and family now. He will be greatly missed.

Im hoping that 2011 brings much more improvement for Noah. I really am super excited to see him progress already and hope that his improvements will lead to progress with sitting and head control. I can only hope. While I hope I will enjoy all the smiles and babbling that he is doing and be proud of everything he is accomplishing. I will also be thankful for all my friends and family who show their continued support. We love you all!

A New Post!!!!!

So where do I start so much has been happening....some GREAT news and some not so good. We will start with the GREAT news....

GREAT NEWS~~~~~

Since going on the ketogenic diet in Boston Noah has been doing AWESOME! We went from having 3-8 siezures daily, and now since the beginning of this diet Noah has only had 10-12 siezures...that is 10-12 siezures in about 3 weeks!!!! So exciting. When we went to his 2 week follow-up the doctors were so excited. Not only has it helped with his siezure control but he is gaining wieght and has hit his growth curve (3%) again and is thriving. He is now 29 lbs 3 oz as of Tuesday.

He does have ear infections in BOTH ears right now that he is being treated for. But he is so much more alert and vocal on this diet too. The physical therapist have noticed a difference in his strength and alertness and everyone is super excited and hoping that this means improvement is soon to be seen. I can only hope!

We finally have our IEP for preschool scheduled after I yet again put my foot down and called and told CDS how I felt about their services. Once I called they decided it was time to get an appt scheduled. We are meeting on Dec. 2nd at the Morrison Developmental Center and getting this IEP done. This means my little boy will be attending preschool soon. So many mixed emotions. Im so excited for the opportunity that this is going to provide for him but anxious and nervous letting him out into a world that has so many germs and etc. Im emotional that I must let go a little bit and that he is growing up so fast... (as tears blur my vision). But it will bring him joy and so much opportunity to grow.

This week is a busy week. December 1st we go and get his feet braces for him to wear to help with the involuntary spasms of his legs and feet due to not using them. He will wear them most of the days to help keep his feet and ankles at a 90 degree position.

BAD NEWS~~~
This last week into this week is a tough week for our family. My grandfather is in the hospital in CCU. He had emergency surgery last week and they removed his colan and he is "gravely ill" as doctors have said. Right now he is sedated and on a respirator in hopes that he will gain strength but things are not looking great. MANY MANY prayers are needed. It breaks my heart to see him this way. Grampa lived with us the first year of Noahs life and we became extremely close. Noah is infact Grampa's Little buddy. I just beg people to pray!

The first Few Days on Diet

We got to Boston Childrens Hospital on tuesday.... by the time we got his blood work done downstairs he was admitted to 9 Northwest at around 2:30 that afternoon. He was started on the new formula *KetoCal* half strength at around 5:30pm. All was going well. Wednesday morning he was smiling and sleepy but was told this was to be expected. This was ok. We took him for a walk around the floor and he was smiling and having a good time. Then things took a turn for the worse. He started retching, after retching, after retching...by the third time the doctors came in and said this was sometimes a normal reaction of the diet. The transition to this diet was not always pleasant but he was ok. They had them put an IV in his foot (which Boston isnt to impressed with his viens either) gave him some IV fluids and after an hr or so started him back on the diet with IV fluids hooked up until about 730pm. They had been worried he was getting to acidosis but blood work did not show this to be true. Hooked up to his feeding pump he did well all night. Stat's stayed up in the high 90's and no retching. Blood work done this morning was also great and things were going smoothly again. He was sleepy but holding his fluids and happy until.... 12:30pm. He then started retching violently once and then again 15 minutes later. His oxegyen started dropping again. Gave him a break from feeding and gave him some blow-by oxegyen.
We have hooked him up again to his feed and crossing our fingers will progress....

The doctors are all okay and confident with how things are going. We get reassured that this is a normal occurance and although hard to watch and put him through will result with some benefits in the near future. We are changing Noahs whole metabolism and this is tough and he may just feel "icky" for a few days.... It will be so worth it if it helps to give him better siezure control in the future..

A New Adventure! A New Journey!

WEll.... things have been slowly working for us. Noah has been given the opportunity to go to Boston and try the Ketogenic Diet. WE are crossing our fingers and holding our breaths. This is a HUGE change for us. Not only does it change his diet (formula) but we have to be VERY careful on which products we use on him. From body lotions and shampoo too chap sticks and toothpaste. It is a HUGE change but it will be so worth it if we can at least slow the siezures down.
Siezure activity has been high lately. Not only because he has been sick but even before this. Most of them have been the smaller siezures but just this morning he had a siezure and decided to stop breathing on the nurse.... hoping no more of those show up. We leave for Boston on November 2nd and are at Children's Hospital until November 6th. I really pray that this works for him. IT would be so great to see the siezures slow or stop and to see what he can accomplish without them.

This last weekend Noah was hospitalized at MMC. Another cold that he couldnt handle. He couldnt breathe through all the congestion. His oxegyen stats were dropping. We brought him to the ER on Friday morning. Immediately he was rushed to critical and we were admitted until Sunday afternoon. We came home still on oxegyen with him still not keeping his stats up without the extra help. Last night the nurse was able to take him off oxegyen around 11pm and he has been at 96% oxegyen all day. YAY! He is smiling and seems to be feeling better too. It was making me nervous that we might have to reschedule Boston but Im feeling better now!

I got a call yesterday that a spot has opened early at Morrison Developmental Center for Noah. We were told there was a year wait and Noah was on the top of the list. A opening has became available sooner. So my little boy will be going to preschool soon. We are beginning the process and hopefully by the end of November he can start. This brings a mix of emotions to me but I know it is an awesome opportunity for him. And I look foward to seeing what it brings to him.

I will keep everyone updated on the future progression of the new diet and school. These next few months will bring many changes. I hope and pray that it will bring good news to come and a healthy upcoming 2011.

P.S.

One more thing......

We have decided to put Noah into that Preschool program it was a SUPER hard decision. But we took a tour (Erik, Myself, Noah, Grammy, Grampa, and Noahs PT Lana) it was a great experience and it would be such a great opportunity for Noah. We spoke to Noahs pediatrician about it and she was on board and thought it was a great opportunity as well. Their are risks to him going out into a environment like that but sometimes we just have to weigh the pros and cons. And we feel that this opportunity is to good to pass on for Noah. So we were hoping for this fall but the class is booked. But next Sept Noah will be a Student at Morrison Developmental Center hopefully. My little boy is growing so fast....
Ive been working again on his scrapbook (although Im three years behind) and I just remember and wonder where the time has gone....

Waiting, Waiting, Waiting some more

So 8/23/10 we did go to Boston and they did blood work ( poked him once with the needle with success...woohoo) and they said as long as the blood work came back ok Noah would be a great canidate for this Ketogenic Diet... After we heard the results we would come to Boston Childrens Hospital for four days and be admitted and start the diet. So we have been waiting for the results. While waiting I have been keeping track of Noahs siezures---- Noah has had 96 small siezures in the past 28 days! 96!! I have called Boston twice to find out the progress of this diet situation and always get told the same thing " they will call when they get the results!" Frustrating! I just want to begin this diet so that hopefully it will reduce the amount of siezures my baby boy is having. In the past few months since the increase in siezures I have watched Noah decline physically. He doesnt hold his head as well anymore, etc. Its so discouraging. But I really hope he gets accepted for this diet and Ive read such good things about it. I really hope this is the answer we have been waiting for.
AS for Noah's health besides the siezures we have had a struggling start to fall and weather. WE have been hospitalized once for a viral cold that Noah was having trouble fighting. It took him two weeks and he was just starting to sound better and look more like himself and now well, Mommy has broncitis and now Noah is running temps and getting congested again. He went to the doctor today and she expressed that because he is already been so sick and winter isnt even here yet we might be in for a rough winter.... I hope we can prove that wrong.

On a happy note I finished my degree in July and recieved my Associates Degree in Early Childhood Education. I recieved a job opportunity with DeerPond Educare at the end of August and took it. Ive been working PT as a Jr. Preschool Teacher in the facilty and love it. Its such a great atmosphere to work in and working with children everyday is great too. Im very happy with my career choice.

My love life is still going strong. Erik is so good to me. And I just love having a family to come home too every day. The girls mean so much to me and Erik does too. IT has really made my life happier being with them. They are all so good to Noah and its so nice for Noah to have a daddy figure in his life. For a while I never thought he would have that and I cherish Erik in his life everyday. Just as I cherish Erik in my life everyday too. Erik and I have been struggling with life financially lately-- but in this economy isnt everyone. But my point is sometimes that can ruin a relationship and although it has brought about our fights I think in the long run it is and will make our relationship stronger.

Keep praying everyone. Pray that Noah is a good canidate for this diet and pray that the diet at least slows the siezures if not erases them from him life all together. Wouldnt that just be wonderful.... thats what I dream about.....and hopefully one day it will come true!

The Start of a New Adventure

Well Monday we went to Boston Children's Hospital for an appt to talk about the Ketogenic Diet that might help Noah's siezures. They are very thorough there. We first met with the Nurse who did the routine wieght & height and a urine sample.. Then we met with the doctor who went over the diet and its pros & cons. Then we met with the nutritionist to talk about the diet itself and what foods he will be allowed and formula etc. Then the social worker came in and made sure everything finacially and support wise was ok. Then we had to go to the lab for blood work & to drop off his urine from earlier. This is where I hold my breath.... The get his blood first try. But the urine from earlier is no good so they need a new one. We wait for 3 1/2 hrs for him to go. It didnt happen and they say it will get done when he comes back!
But they are going to do up his blood work and check his metebolic levels and make sure that his body can handle the diet. If everything comes back and they give him the green light we go back to Children's hospital in the end of Sept to be admitted for four days to begin this diet. The diet sounds great and sounds like it is worth trying. Hopefully it will stop his siezures all together but sometime it just slows them down. I'll take anything at this point. He is siezuring everyday. Yesterday he had 8-10 seizures that I/or the nurse witnessed.

The decision about preschool has been made and are in the works. I have decided with the help of family that we are going to try the preschool thing with Noah. It is going to be a great opportunity cognitively and physically. The big set back to making this decision was the health fact that he could catch something that his body wouldnt be able to fight off but the pro's to this situation are to good to pass up. We have decided that he could catch these viruses just goin to the doctors or out in public and if he goes to preschool and keeps catching illnesses we will pull him out but we have to give him the opportunity. There is a waiting list that we have been put on but as soon as that is over my little boy will be going to school.

We have also set up to get his ears looked at for a second opinion. We are begining the struggle of ear infections again and I want someone to reevaluate for Tubes. We are in there every month it seems with an ear infection and down to one antibiotic that seems to work.

I was offered a Part Time position last week at the Daycare that I did my externship with. I will be the afternoon head teacher of the 3 year old room. I am super excited about this, and will start on this friday. Its a 2-6 position so I will still have my mornings with Noah. I hope that in the future it can become more that PT. But its a great opportunity, and I really enjoyed it there when I was externing.

I also got great news from the diabetes dr last week that my A1C is still at a 6.8 and she is super happy with this. This is wonderful news.

Update on Life

So as usually things can change quickly in the life of Noah. We are struggling again with siezures. He is having them quite frequent. They are the little ones... the tremors and staring spells but he is doing it very frequently throughout the day. Two weeks ago I requested an EEG on him and the doctor says the frequency has increased greatly since January and he is requesting that we be seen at Boston's Children's Hospital for a possible trial of Ketegenic Diet. Which is a high fat low carb diet for children with siezures that helps the body fight the siezures. So August 23rd we go for our first appt in Boston. This is a 3 hr evaluation and consult. A month later we will go into Boston Childrens Hospital to be put on this diet. We will stay for 4 days admitted into the hospital. Then when released we need to go back two weeks later for follow up, one month later after that follow up, and then every three months after that. Lets hope this works. If it works there might be a possibility that we can take him off from some of his meds. That will be a relief.

Brought him to the doctors yesterday with a temp, retching, and etc. We found a right ear infection again!!! It seems like every month we go through this. I have decided to get a second opinion on Tubes and this appt is being set up.

There has been a huge decision brewing on the Noah front.... We have been researching putting Noah in a specialized preschool. ITs called the Morrison Developmental Center in Scarborough Maine. This is a low functioning preschool setting. We took a tour of the facility last friday. The center has a few kids in it that reminded me of Noah. And when talking to the Head Teacher there about Noah and his special needs I said " He has siezures that makes him stop breathing..." She spoke up and said " your gonna have to try harder to scare me" and one huge wieght was lifted off my shoulders about this situation. There is a nurse in the room most days and if I can get approved I can have a special nurse transport to school with Noah and stay during the day with him too. ITs a HUGE decision that I am struggling with. It is an ABSOLUTE amazing option for him. Learning wise I think it would be fabulous. He would get therapy there everyday most of the 3 hrs he is there... the only struggle is bringing him into the public and making it possible for him to catch some sort of virus that he will not be able to fight off. Can I take that chance? I dont know that answer yet. I need to really think that through because I dont want to regret it later if something were to happen to him. But he seemed to really like it there when we were touring it. He was smiling and very alert to all the new sounds around him. And that tells me I should just do it. ITs just hard to let go. But knowing that he will be enjoying himself and learning really helps to know.

I finished my schooling. I officially hold an Associates Degree in Early Childhood Eduacation. I have a job interview on August 25th for a Assistant Toddler Teacher in Portland that Im crossing my fingers for. We will see. Very exciting.

Better Late then NEVER!!!

So It has been reminded to me by my dear grandfather that I do love so much..... that I have not posted in quite some time....

So hear I go:

Noah is doing great! We had his 3 month follow up appt yesterday and things are progressing. He weighs in at 27 lbs and is 37 inches tall. He was quite verbal, blowing rasberries, and moving all around on the bed at the office and the doc loved it. He is getting so big now. I was looking at him the other day and was like "he doesnt even look like a baby anymore". It is sad but in another sense it is so wonderful to see him gaining wieght and growing now.

We did get that airway clearance vest for him last month and ever since the doctor's say his lungs have never sounded better. On top of the vest we now also have oxegyen in the home in case he stops breathing and deep suctioning for his secretions. Things have been looking up. The oxegyen is so great to have. I have a sense of comfort knowing that I have it. Just two weeks ago we were able to go to a friends cottage that I havent been comfortable going to in three years because I was afraid he would stop breathing and it is harder to get to by vehicle. The oxegyen in my car made me feel comfortable knowing that I could use this until someone got to us or we could get him somewhere.

Two weeks ago after a little bit of fighting for it we recieved his car seat. Now Noah can sit foward facing in the car. This special car seat gives him enough head support to be able to do this. He now can see where he is going, instead of where he has been. It gives him more room for his legs and he absolutely loves it. The first day we put him in it he wouldnt stop blowing those rasberries and babbling in the backseat. Mommy likes it to because now I can see him during our rides to the doctors, etc.

Siezures are still a work in progress. He really hasnt been having any "big one's" lately. Its been more the small tremors and staring, etc. The doctor put him on yet another med for his siezures last month. I cant tell if its helping or not. I think it is in the sense that he isnt having the big ones but he still is having the smaller ones. I dont think this heat is helping though. We have an air conditioner is his room that we borrowed from Megan. I try to keep him cool as much as possible.

We have brought him swimming this year quite a bit already. Just this last weekend we brought him to a lake and he absolutely loved it. He kicked and splashed and smiled. It was so cute to see.

Im working on finishing my internship this month. July 23rd is my last day. ITs been a lot of work but I am excited to get that degree in my hands. I graduated in June and walked across stage...not I just need to finish so I can get the degree. ITs been alot of fun interning. I've learned some great things. And the kids are great too. I cant wait to be in charge of a classroom some day.

Still struggling with my sugars on a daily basis. Been really focusing on this since the miscarriage. We are planning to start trying in Sept. Im excited. the goal is to get my A1C down to 6.5 and last A1C measured last month was 6.8. So we are almost there.

Well I think that pretty much sums the last few months up.....

Yes, Grampa I will work harder to keep this updated.!! :)

Love to everyone.

Happy Birthday Noah

8:51 pm Noah is 3 years old! Wow time flies by so quickly. Three years ago tonight I became a mother! I gave birth to a handsome man in my life. Although we have had MANY challenges in those three years it has been the best three years of my life. He has made me the mother I am today. My world would not be as special as it is today. He has brought tears of joy and sadness, laughter and pain. But most of all he is the sunshine of my days. He makes me smile everyday. He brings me love. He makes everyday worth living.
Three years old today. WOW!!!

Lets all pray for a happy healthy year to come!!! And thank god for the past year! It hasnt been all that bad. Some struggles but not horrible.

Today Noah went for a chest xray. We had a follow up appt with the pediatrician. Chest xray came back negative. Phew. Still sounds horriible. Will do some nebulizer treatments and some vapor baths and hopefully we will keep him from getting phemonia. But the close call today made mommy hesitant to sneak in a little ice cream cake*** we will see how he sounds tomorrow. One bite will not hurt him. ITs celebration time after all.

Doctors are working on getting him a vest that will vibrate and help him to bring up some of his congestion. They are having trouble locating a vest but are still looking.
Ears look great again. YAY!!!
Woke up this morning with a siezure but nothing major. Thank god. And the pediatrician said that she saw a new tooth coming thru on the upper left hand side. YAY! Another tooth.

More.........Bad News

Last Friday we went in for my ultrasound.... the baby had grown and you could see something this time....however bad news was to come. Our excitement came to a quick hault when the tech said she was very sorry but the baby didnt have a heartbeat. Or little angel was no longer living. It was a tough night. It has been a tough weekend. But we plan to try again in the near future.
So even after this sad news I put my tears and sadness away for one day and we still had Noah's 3rd birthday party. What a beautiful day we had this year...and what a wonderful turnout we had as well. I couldnt have asked for a better party. It was nice to have a day full of smiles and fun. Great to see family and friends that we dont get to see often...and Noah even snuck in just a 'lil bit of ice cream cake..
I honestly cannot believe he is turning three this year. Time goes by so quickly. Looking at him yesterday he doesnt even have his baby face anymore... my baby is growing up so quickly. Well now that we have got so much bad news this last month about Noah maybe his 2010-2011 year will be a healthier and happier year this time. I say that every birthday but just maybe this will be the year.

Month of April

The month of April did not go over so well. We had two weeks of hell. The first week we were told that Noah is "legally blind." Although I expected it, it was still very hard to hear. Then a week after that we took him for his swallow study in Lewiston. They tried both solid foods (mashed potato, and apple sauce) and then they tried liquid. He failed all three. He aspirates everything and can no longer be fed by mouth at this point. The speech therapist in the test said that the therapist at home could work with him but at this point Noah shouldnt be fed by mouth. This was very upsetting news to me. I knew he was gonna fail the liquids and was okay with this, however I really really wanted him to pass the solid foods. So we are pumping on a daily basis. Sometimes if the girls are eatting a lolli pop I will have them rub it on his tongue so he can get the flavor or if Im having a freeze pop I'll do the same thing but he cannot have anything he actually has to swallow. However his 3rd birthday is coming up (wow the time goes by so fast) and we are having a party for him this weekend. He loves ice cream. Grampa got him started on that at an early age. So Aunt Linda's making an ice cream cake and Noah is still gonna have a little bit of ice cream on his birthday.
Yes, he is turning three I cannot believe it. I really cant. He is growing so fast. Getting so big. I wish we have had more first's since last year but we dont. He has improved so much though. We are gaining and thats all that matters.
After all the bad news in April, the end of April brought a surprise to the family. It seems that we are adding a new addition. I am pregnant. I am about 7 weeks pregnant. After the shock wore off we are all very excited. Honestly I am nervous too. But thinking positively. We are going to have a happy healthy baby. And everyone keeps asking me what I want this time a boy or a girl. My answer is 100% honest and to the point. I dont care as long as its healthy. Many friends and family pass encouragement saying they have a good feeling. One friend says "God wouldnt do this to me twice, he knows you couldnt handle it." I hope they are all right and I pray every night. Please pray with me. Im super happy. Erik is very supportive and I know this baby will be a blessing. It already is. We are due on December 13th. Right before chirstmas what a wonderful gift.

More not so great news!

Yesterday was Noahs eye exam. I was hoping for good news however it wasnt the case. The doctor did a bunch of tests on him using different toys and lights and colors. One test tested wether Noah had a connection with his brain and eyes. There was no movement therefore no connection. The doctor did this test several times not wanting the results to be given to me. Noah is legally blind. He has some periferial vision but no central vision at all. "Legally Blind" is such a little word but such a blow to your heart when you hear it about your child. This doesnt change any of my feelings toward him. I love him just as much as I did Sunday night before we found out and we will work through this. Just as we have done so through the rest of the not so good news we have recieved in the past. Im not going to lie and say it is easy because it is not by a long shot. I spent a lot of yesterday very upset. But we will do everything we can for him.

Rough winter!!!

This winter as you can read in the subject of this blog has been a rough one. Noah has been sick with something one after another. Mostly we have had three phemonia's in the last 3 months, a viral cold close to another phemonia, and a few retching episodes. Its been very stressful for me and I cannot wait for spring in hopes Spring brings better health. Just last week we went through the viral cold that was very close to phemonia in my opinion. We had many nights of steamed bathrooms for 15 minute episodes, vaporizers, lots of suctioning of his saliva, pounding on back, etc. His stats were very low at night dropping into the med-high 80% oxegyen level and sometimes dropping as low as the high 70's. Very scary. He does however seem to be doing better this week. (knock on wood) He still seems congested at times and has a horrid cough at times but his stats have been in the high 80's to low 90's so Ive been happy.
We started night time nursing last week. Last tuesday to be exact. And I have to say that it has helped so much. The first night I was a reck and didnt sleep very well...worrying and having nightmares about leaving him with someone new. But after that night and seeing how well she does with Noah has relived my worries and Im getting the sleep Ive needed for a long time. The nurse we have is great she is very attentive, and when he wakes up with her at night she gets some PT excersises in and reads to him and cuddles him of course. She seems to be a good fit for the family.
I did go see the specialist for my foot and luckily no surgery as of now. However he was lovely enough to put a Cortisone shot into the bottom of my foot. MAN THAT HURT! but it is doing better now. I have plantar Fasitis meaning tendons in my arch are severely strained and tearing. PT excersises and the coritsone shot and it should get better. Hopefully. IT does feel somewhat better however since the shot Ive been struggling with charlie horses at night in the bad foot. Nothing seems to help. So hopefully that goes away the more I do my PT.
Noah has been set up for another swallow study. I am really Really nervous and stressed about it. They think that his aspirating has got worse and this is the cause of the increase in phemonia. I cried in the office when it was suggested we redo this test. This is the fight Ive been having since he was 6 months old. I want him to be healthy and I do want to find out but I just dont want to take food by mouth away from him. I agreed to do this test on one condition and that the test be done by a different hospital other than MMC in hopes for an unbias opinion. I have really worked and fought hard on Noah drinking bottles and eatting by mouth and it scares me to get this taken away. His appt is April 14th at Central Maine Med in Lewiston, ME. Erik and I will be bringing him and Im really praying that it is okay news. I have decided that as much as I would hate it Im ok with them telling me he cannot drink from a bottle (as tears stream down my face) as long as they say its still ok to eat icecream ( he loves it thanks to his grandfather LOL) and solid foods. Just this one thing is all I pray for everynight.
We also have an appt scheduled to an Orthepedist to look at his curvature of his spine. This is scheduled for April 26th. I hope this is not bad news as well.
Noah is now set up with Case Management services now and the lady we met with seemed to be great in that she was going to help us to get some great things. It feels good to have someone on my side who can help me now.
So March seemed to bring adventures through the sickness realm....Im hoping and praying for April to bring good news, answers, and health.

Another Hospital Visit

So this month has not started out so good either. Sunday Noah started to sound really "junky" and was running a temp. I tried to handle this without going to the hospital or doctors office--crossing my fingers it was just a cold. Sunday night his stats were really low...so Monday morning I took him to Goodall Express in Waterboro. They listened to him and took his oxegyen stats as well... registering at an 86 % the doctors decided that Noah needed oxegyen and should be brought to Maine Medical Center by ambulance to get the care he needed. He has phemonia. So we spent the night in the Barbara Bush Hosiptal.
He is home now and we are doing everything we can to get him feeling better. He is doing better but we are still struggling a little. Last night his stats dropped to 81 at bedtime. We brought him downstairs and steammed up the bathroom and brought him in there for 15 minutes. I set up his Vicks WAterless Vaporizer in his crib and we got his stats to stay at 89-90 all night. Mommy was a nervous reck all night but it worked.
I went to SMCC yesterday to get my foot looked at finally. It has been hurting me for at least 9 months but I have been to stubborn to go get it looked at. It has finally got to the point it hurts so much to put any wieght on it and it just aches all the time. So I went. Xrays confirmed that I infact have a pretty big heel spur on my foot. I go to a specialist on Monday and Im a little nervous that they are going to say its surgery time. But maybe besides my fear of needles this might be the best choice anyway so that I can get it healed as quick as I can so I can be back to my 100% self for Noah. We will see how it goes Monday.
So Today I registered for the Epilepsy Walk again. I really hope to raise more this year than last year, and Im hoping that all my family and friends from last years walk does it this year too. Here is the link to my page:Please go on and help me raise money to a cause that means so much to me and my family. And anyone interested in walking let me know you can join my team!

Where do I start....

Well its been a while since I last updated my blog. But this is by far not the longest I've gone!! LOL!
Well this blog will bring many updates on many different things some good others bad. Here we go. Noah is doing okay. January and Febuary were both hard months for us. January being the worst. We got through the EEG and the allergic reaction and the phemonias finally. Lets hope March brings back the less bumpy path. He has had some tempatures lately reaching 103.2-103.3 but bringing him to the doctors office on Monday the doctors felt it was just a viral bug going around. He seemed to do better Tuesday but Wednesday had the temp again. No signs WEdnesday or today so lets hope that it is done.
On Febuary 20th we brought him in for his scoliosis xrays. The results showed that he does in fact have a 20 degree curvature to the spine but his pelvis is fine so far. We are going to be seeing a orthropedist as soon as we are referred to one. The pediatrician and Noahs therapist feel that this visit will result in the specialist just wanting to keep close eye on him for right now.
The struggle to get Night time nurses is still an on-going struggle. I finally gave up on the first company and researched a company close by. They were going to hire my own mother to come into the home and they were going to pay her to watch Noah. We were very excited about this. I was approved to recieve 48 hours and was going to have four nights and some day time hours covered. However the agency had a weight restriction of 20 lbs! And will not let mom lift him. So now Im back to square one and have started back with the first agency. They are coming into the home on Wednesday next week to do their evaluation and hopefully in two weeks I will have help. Frustrating.
He was doing pretty good sleeping well at night but lately its been another story. We do have some good night but we still have quite a bit of not so good nights. It would just be nice to have some help.
Because of this we have decided to change my scrapbook room into Noah's new bedroom downstairs. I went out and got a dresser and Noah's auntie Holly helped me to find a really great deal on a brand new crib. So we have a room for him now that is his very own...well besides the computer being in it!!! But its nice to have his own space where I can put his equipment and supplies! Very exciting!
More Good news!!! I went to sign up for classes for this term and was told some very exciting news. Because Andover is switching to Kaplan University some of my classes from YCCC that didnt transfer to my major when they were Andover now do transfer. This term I am taking two online classes and next term starting in May I have to do my externship and then in June I graduate! I get my degree, my associates degree in Early Childhood. Not sure what I am going to do with it yet. I've got some options we will see what I decide as it gets closer. But I am so excited!!!
My wieght loss has slowly came to a hault but its my own fault. Over the past few weeks I just had so much going on and Noah's really been sleeping like crap and I just havent had the energy to workout. I keep saying Im going to return to it but I just havent found the stamina yet. Really am going to work on this in the next few weeks. I can do it. I want to do it. I need to do it.
This week Erik is on vacation so we are going to start painting the house. We have paint for the kitchen and dining room. And the girls room. So starting next week my house is going to be madeover!

On our way!

Well this last week has been a little stressful. Noah has been seeming to get worse and worse (phemonia), I was very anxious about his appt. yesterday. Knowing that the news was not going to be great. Indeed I was right. The doctor did not like how he sounded at all and had us go downstairs for another chest xray, and changed his meds. Gave him the new med last night and he slept from 630pm straight through to 715am. I couldnt believe it. He sounded so much better this morning. The doctor called this afternoon that she couldnt believe it but the xray didnt show any signs of infection. She wants us to finish the meds but she thinks he probally has a cold or something. Which would kinda makes sense since mommy does!
I went to the doctors on Monday because I have been congested and my ear killed me all weekend. Most of the weekend it felt as if I had water in my ear! No ear infection just fluid but I do have a sinus infection. Been pretty miserable the last week. Feel better but still not 100%.
However, more amazing news is that Noah's new siezure med to replace the phenobarbitral due to the allergic reaction. The clonopin seems to be working (knock on wood) he has been sleeping great at night. I think the past few weeks Ive got more sleep than I have got since he was born...well after the first two weeks of sleeping all day and night(when I thought I was gonna have it easy---ha!ha!) We have had maybe one or two nights that were tough but he's been going down about 930-10pm and sleeps till 4-5am, wants to be held-or put in mommy's bed and sleeps til 7-8am! (knocking EXTREMELY hard on wood-lol). But it has been a wonderful change, and I hope it continues! It seems to be doing ok with siezure control as well. There have been a couple of days that he has had head/body tremors but nothing substantial! And I honestly havent seen any at all for the past few days! YAY GOOD NEWS FOR ONCE!
He has seemed to be more alert as well. Maybe its my wishful thinking but he seems to see more. Sometimes I catch him watching TV now.......football exspecially----- Erik enjoys this!!!!
Things on the relationship aspect have been really good lately. We have had a few rough patches the last couple of months but I am really blessed to have found such a wonderful guy. Its nice to have someone hold me and comfort me on the stressful days. This last month has been really tough on me emotionally with all the hospital visits and one thing after another and Erik has really stepped in and been my rock! Im so thankful and sometimes I dont show it as much as I should. THANKS BABY~
The girls are doing well. I really enjoy stepping up and being there mom. Some days can be challenging but Im always up for a challenge!!!
Well the next step with Noah is to get his spinal xrays and hip xrays done. The chest xray did show that his spine has a curve to it- this makes me really nervous and I hold my breathe just typing this. So I want to get this done as soon as possible! Ive had the slips for this for a couple months but one thing after another and Ive put it on hold. Now is the time to get it done.
My weight loss is coming along s.l.o.w.l.y. but for sure. This week I wieghed in with a .75 pound loss. Not a lot but with being sick and stressed I will take it as a loss. And continue on this journey.

Too many bumps but we will get there!

Well Noah has had a few more bumps in the road this week. Since Saturday Noah has been running a slight fever around 100-101. Brought him to the Pediatrician office and they could find nothing wrong on Monday. Well last night when we got home from TOPS he was burning up so I took his temp---- 103.8!! Yikes. His heart rate was over 180 so I took him to MMC. They took a urine sample and an xray and found that he had phemonia and an ear infection and we were able to go home. They came close to keeping him over night but the doctor trusted I could treat this at home....thank god Im tired of seeing the hospital walls by now! Got home at 4am.
Today he is still running a temp. Just not as high. He slept most of the morning and afternoon and woke around 2:30pm. Im hoping that are sleep schedule is not messed up and that we are still gonna sleep tonight!

For the past two weeks Ive begun to really watch what I eat and begin to really put effort into my wieghtloss! I got the Biggest Losser Wii game for Christmas. I started a challenge two weeks ago. I've been working out at least every other day since. Although my scale had me looking foward to a huge loss yesterday I wieghed in at TOPS with a 2 lb loss last night--- happy about that but not so happy with my scale lieing to me!!! :) With my exhaustion from last night and being sore from stepping it up a little more in yesterdays workout I took a break today on my workout but tomorrow I will be right back to it.

Well I will keep you updated on Noahs progress and mine as well. Hopefully we find that smoother road soon. Im tired and emotional and could really use some luck right now!

An Allergic Reaction

So Thursday afternoon we ended up taking Noah to MMC Emergency Room. His rash was making his face swell to the point he had trouble opening his eyes. Walking into the ER the registration desk immediately interupted the nurse to come look at Noah, and with a room full of patients we were the second called out back to the ER. Doctors at first were not convinced that this was in fact an allergic reaction, and we saw many doctors in the ER. Finally they were convinced and began steroid treatment and benedryl through the Gtube after failure to find a vien for an IV. After a couple of hours Noah's rash had begun to transform for the better. After confessing my concern, they had the admitting doctors come take a look. They felt my concern about the siezures but also had concerns of their own. They wanted to keep him over night and run some blood work to make sure that this wasnt an super severe allergic reaction that would concern Noahs bladder, kidneys, etc. So they admitted him, did a finger poke to get blood, urine bag, and ran tests. Thankfully there was no reason for concern and all test came back fine. His rash had improved more overnight, and we were comfortable heading home. Or as comfortable as I would be. We have started a new med. Fingers crossed...breath held....I hope this works and there are no reactions..... although Im used to all these bumps in the road...I really preferred the smooth road that we had been traveling on before for a while. Lets hope this road meets up with that one very shortly!

Things not so good.....

So Noah has come down with a HUGE rash all over his body. His face is completely covered and swollen! For the past two days I have been at the pediatricians office. The doctors are not sure if he has just a viral rash or if he is having an allergic reaction to the phenobarbital. Im thinking that it is the later. I have a call into the doctor's and the neurological doctors office. I have heard back from the ped and she is trying to get ahold of the neuro doctor as well. She is thinking we are gonna ween him off from the med. and put him on something else. AS scary as that is... he is completely 100% miserable. And I hate seeing him this way. It breaks my heart. He was up all night and screamed for 1 1/2 straight. Nothing helps.

Lets hope I hear from the doctors soon. Gonna go lay down for a bit while I have him resting.....

Happy and Healthy

So far so good. Noah seems to be taking well to his new meds for the most part. We went to his pediatrician yesterday for a follow up. With a big surprise at the scale. Noah now weighs in at 25 lbs 6 oz! Its incredible. So proud! The doctor told us that Dr. Morrison wrote in his report that he did see some good changes in Noah's EEG with the switch to phenobarbital. YAY!! Progress! I asked him if the phenobarbital could make him cranky because he has started this *new* high-pitched scream. He siad that this could have to do with the new med but it should hopefully wear off. Lets hope so! Im so happy that he has seemed to do well on this med. Not to sleepy in the morning and afternoons I've actually thought that he seems more alert!
Today we head to his PT in Sanford around 130 and we are going to be able to pick up our "CuddleBug" his new stroller! Im so excited...
Well things here are off to a good start this 2010 lets hope it continues!

Home Sweet Home

Well we did end up going home last night. The doctor and resident spoke and came up with a plan that I could agree to. It helps that the resident that was in charge of Noah on the floor (Christopher Jons who is great!) came in and explained things a little bit. It always helps to explain to the parents rather than just state what is going to happen. I wish most doctors would learn this. However we can always count on Dr. Jons to do this thats one of the qualities that makes him such a good doctor. Anyway... so Dr Jons came in and explained that this new medicine is one of those meds that never really leaves the system. Some of it will get metabolized out but most continues to stay in his system and when more gets administered to him that dose builds on the others. This is the reason for the dose to lower. Which makes since. So this being said the doctors sent us home on the 60g dose for 2-3 days. After this we will have a blood draw (i hate those they always have a horrible time getting a vein on him) they will check levels. We are planning on lowering the dose to 45g on Monday unless the blood draw speaks differently.

Last night was our first night home and it was so great to be back with Erik and the girls and of course my own bed. The girls really missed both of us while we were gone and Marissa even made me a card expressing this. It was so special to me. Noah actually did really well. He got up once for an hour with Daddy.... a small siezure awakening him but it didnt last long and it was just a little body tremors nothing major (phew).

He actually has done very well today and has been up most of the day and has began to drink bottles again. For the past couple of weeks we have struggled with this and needed to pump him his feeds for he was coughing on his bottles. Today he has drank 8oz all by himself and I have not felt the need to pump....YAY!!! thats a relief.

Well today has been a day of relaxing and just enjoying being back in the home....time to go bake some banana bread for the hunny! **** I think he missed having his chef at home hehehehe***

Home Sweet Home...or not???

So sitting here in my hospital room ready to take Noah home...or as ready as I will ever be. Doctor called this morning and was confident that Noah could leave today. Last night they again gave him the 60g dose of the new meds and I questioned this for the night before I was told it was switching to 45g. The resident said he was confident he was reading the orders right and wanted Noah to have the 60g. We did but I made it clear that I was not going home on 45g until it has been given to him here for 24 hrs....especially after having a medium size seizure last night. The nurse said she would write this down and totally agreed with me. The doctor called this morning to inform me that he was confident that Noah was ready to go home and I stated my concern for Noah going home on 45 g when he has been only watched on 60g. The doctor stated that we would keep on 60 and do a level blood check in a week. I was okay with this. Nervous but okay. Packed the place up and got Noah ready for discharge. The discharge resident just came in and announced that Noah was going home on 45g and that Dr. Morrison was okay for us to go home...... needless to say she is calling the doctor ....... I will not take my son's life in jeopardy and go home on a new medicine and a new dose that has not been watched to make sure he isnt gonna stop breathing---turn blue----turn gray---- or put his life in jeopardy..... I dont understand how he could think I would do otherwise....
So as of right now my feet are planted and I will not move until Im comfortable with the circumstances.......

As for my car, I called the insurance company this mornign and I have a $250 deductable to fix it. I dont have that amount of money so Im screwed... Mom said Maybe dad can pull out the dents we will see.....

Good day ends in Frustration!!!!

Noah has been doing well today. Acted a little funny but I think he needs to get used to the new meds. Had a couple of small spells but nothing major. Had a nice visit with Erik and the girls It was nice to see them. I miss them alot when Noah and I are here. I cant wait to get home and back to normal surroundings as soon as his siezures are controlled.
Tonight ends in frustrations though because sometime this week my van was hit in the parking lot. No note was left and there is a dent on my passenger side front of my van. Just missed the light but dented regardless. Frustrating.....

The first night of our new journey!

So last night was the first night on the new med. And the first night completely off from the Sabril. Noah slept very well finally. He got up once at 3am and once at 530 sleeping until 8am this morning. He is very sleepy this morning but the doctor said this was to be expected. Im still very nervous coming off from the Sabril. Not knowing what to expect from him and his siezures is the hardest part. So far so good though. Doctor said that he is thinking we will be out of the hospital Friday but I might try for Saturday morning....giving us one more night to make sure of no siezure activity. Last time really scared me and I really want to take precaution. Although....sigh*** sleeping in my own bed would be nice!
Doctor came in this morning and was happy with last night and doesnt want to change anything. So we will see what today brings......

New News

So last night wasnt much better for Noah and myself. I saw very little siezure activity but he didnt sleep very much either. Finally got him to sleep around 3 am and was awake around 430. At 530 he slept for 2 hrs and really hasnt napped much today.
The doctor came around 5pm tonight and thinks that Noah may be having trouble sleeping because its a new environment for him, the wires could be making him itch and he cant tell us, or he could be having a withdrawal from the sabril. He also said that he thinks that some of Noahs movements that we see are not siezures afterall just movements and that some of the seizures that look like his infantile spasms have returned are just siezures and not infantile spasms. Tonight he is taking him completely off from the Sabril and putting him on a new med called Phenobarbital. This med could cause him to be sleepy. So its really hard to decide whether we keep him on a drug to make him blind or a drug that could make him sleepy. But I figured we could try this new one and if it does take this kind of effect on him then we will stop. But its worth trying to save his vision! And Im more comfortable with taking him off and switching while in the hospital and not at home after this spring's episode! It makes it a little less stressful knowing that he is going on something to replace Sabril too.
Tonight they are also giving him some benadryl in hopes that if the cap is keeping him up due to being itchy it will help as well.
So crossing our fingers for sleep and a healthy happy night.....I end my post!
Update tomorrow afternoon!

Update

Doctor came in and said he has not seen any ***BIG*** siezure activity on Noah's EEG yet. Sometimes it takes more than once to see one to understand the brain waves. He has decided that it is okay to decrease the Sabril dosage again tonight. We are again cutting it in half again. This is where the problems began the last time so I am holding my breath, praying many prayers, sick to my stomach, and scared to death. Trying to think positive and will this to work this time. We will see what tomorrow brings. My parents will be visiting around 4-5 tomorrow and I will post an update then.

Hope he sleeps better tonight.......Im exhausted....but I dont know if it much matters how much he sleeps...I may be to nervous to sleep well any way.

Good night all....PLEASE keep the prayers and good wishes coming our way! Thanks for all the support.

Until next time.........................................................................................
Good night! We love you all!

The first night

So the first night was ok here at MMC. Noah didnt sleep very well at all last night. I think it was probally a combination of many things. They are playing with his meds, he is in new surroundings, and he has all these wires glued to his head and doesnt understand what is going on. So far things are going ok with the med changes. He had a small siezure this morning but it was nothing major just the usually siezures he has been having.... as you can see from the picture this morning he was his happy- go- lucky self enjoying all the attention from his nurses and EEG tech. Nothing changes when we go into the hospital he gets spoiled here too. Last night Noah was held by grampa who always makes sure that Noah doesnt go without while we are eatting---Noah got some Chocolate Ice Cream!!! And as usual loved it!

This morning Noah recieved a stuffed dog with a winter hat on its head and scarf. Soft and cuddly. He played with it a little bit...and mommy even got some smiles for the camera

So far so good.....

We are here at MMC. So far everything is going okay. Noah was hooked up at around 4pm to the EEG and the doctor came in and talked with us. We are going to try to take him off the sabril at a slow pace. Tonight we will split the dose in half and see how it goes. Its very scary for me but in the long run it will be better if we can get him off the sabril. Sabril can cause vision loss of the peripheral vision and doctors have stated that Noah ONLY can see peripherally.

So with fingers crossed and a nervous physique we enter the night lowering meds and hoping for the best.....

................................................to be continued

Recent Picture

Just another recent Picture ~~~~~ Noah in his Brady Jersey~~~~~~~~~~~

Read Blog Below for update!!!

Recent Picture and Update!!!

Look at him hasnt he got SO big.... We are improving more and more everyday. Lets pray that 2010 is our year!!!

I havent posted in a very long time...my apologies...Life just sometimes gets the most of me.Happy New Year Everyone!

Noah has been doing pretty good lately. He is getting so big. About 24lbs now! Can you believe it? There was a time when I didnt think we were going to get past 18lbs! Now he's 24 lbs and 3 ft tall. We are really working on trunk control and head control. His head control is coming along nicely... we started working with him with the sippy cup and he was drinking milk so much better through out the day---- however he has phemonia right now and I'm wondering if he is aspirating while drinking through the sippy cup. I have stopped the cup for now and after the phemonia is gone we will try again.

Today I am busy packing....for Noah and I are going to stay at MMC for 3-7days for some testing. They are hooking him up to an EEG for at least three days in hopes to see what his brain is doing and how often he is having siezures. Its usually a three day process but if he doesnt have any big siezures while testing it could take up to 7 days! I'm not excited to leave my home and my nice comfy bed or family but I hope we get some answers--- Im really excited to get some answers.

Well off to finish packing...while in the hospital I will keep everyone posted..