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..

Happy Holidays

SO...... it always gets to be around this time of year and I become the world's most horrible blogger. Life has been hectic! I know its not an excuse but in my defense with the amount of sleep I've been getting lately its really quite amazing that Im still standing and getting through the day.

Noah health wise (knock on wood) has been great. We had one episode about a month ago that he had a severe ear infection and a viral infection that sent his heart rate over 200 and his tempature over 104.00 degrees and we got admitted into the hospital for 4 days. They precautioned him and thought he might have H1N1 and after many needles they finally got blood to result in a negative for the flu. We went home and became a germafobe.
So we have spent a lot of time staying in the house. I go around the house with Clorox Wipes at least once a week, and have a bottle of GermX next to the door so that when we walk through the door, thats the first thing we do.

I say Noah's been healthy...which is the truth. We are struggling with sleeping. Im not sure what is going on. Not that Im counting or anything but we have gone 23 days where we put Noah to bed at 10:30pm. He wakes at 11:30 either having a small siezure or not. Is awake for 1 1/2 to 2 hours and then is up every hour after that. Out of those 23 days he has slept through the night 3 times! Im exhausted and Erik is exhausted. I have finally broke down and called a company called MAXIM that provides Night Time Nurse help. We are going through the process and hopefully will have a nurse coming into the home sooner than later to help me at night. I have mixed feelings about this but I know that I cant keep going without sleep...Im so close to just running straight into a wall!

Family life is going ok. Stressful because we are both tired and can get angry over the smallest things. But I know we will survive. Having the big family I've always wanted is nice and I love it. Erik truely completes me and makes me happy. He is a great dad to Noah and I'm happy I opened my heart again.

SO in the event of Thanksgiving being tomorrow.... I'm thankful for having my big family I have always wanted, Thankful for Erik being my rock and love of my life, thankful for Noah and that this year I think has been all and all easier than the last, and thankful for friends, family, and all of you that support us each and everyday and make all our struggles a little more easier knowing we are loved and thought about. THANK YOU ALL! WE LOVE YOU.

Home Sweet Home Again

Well Noah and I were able to come home yesterday afternoon. His flu swab came back negative! Thank Heavens! He still isnt quite back to his normal self but each day he seems better and better. This morning he seems quite sleepy, but the poor guy has gone through so much. He slept ALL night last night - he must have been relieved to be home too. I know I was. The doctors think that he just had a Viral Bug that wasnt the flu that just hit him really hard. Hopefully thinks will get better quickly. Going to spend the day at home for the next couple of days and let him rest and relax.

Another Visit to MMC

So we have been doing so well for such a long stretch. But thursday Noah started to become fussy and aggitated. Took him to the doctors and they said he had fluid in the right ear and they sent us home. Sunday he was really fussy and wouldnt sleep. Took his temp at 4am and it was 101.8 gave him tylenol and took it again at 9am. It had only dropped to 100.4. Took him to his pediatricians office. They looked in his ears and said "his left ear is worse than I ever have seen it." By the time I got him home and gave his his meds he was breathing funny. I hooked him up to his pulse oximeter which read that his oxegyen was 83-89%. Called Ped. told me to bring him to ER. On the way to the ER his reading got better 92-95%. So I called back and she was ok with her if I took him home but if his levels dropped again I needed to bring him. Got home and a hr after his heart rate started increasing over 200. Took him to the ER and they admitted him immediately. His temp was over 104.

After using Noah as a pin cushion they finally got blood from him and his culture looked ok. The took urine and that looked fine. They swabbed him for the flu and that I was just told takes 72 hrs to get back the results. So Noah and I are in MMC yet again. The nurses and dr's need to robe up and put masks on before they enter the room. He is under precaution. Looks like we are here till Thursday probally..ick...

He does seem to be better today. He does seemed to have broke his temp. but he does still look pale. He had a siezure at 2am this morning and it lasted for about 6-7 minutes. But that is to be expected during illness. Today all he wants to do is sleep. But sleep is probally good for him. Although as I write this message he is in his crib kicking his feet and smiling. And he loves flirting with all the pretty nurses. Typical boy. LOL

Update

Noah has made for a couple of crazy weeks. He started having siezures again two weeks ago. These siezures are different than the ones he has had in the past. His whole body twitches, he doesnt breath very good, drools, and winces his eyes. Brought him to the hospital thursday night and they increased his meds and did a medicine level check. Friday got the results of the levels and they were in the correct range but he was still having siezures. Took him to MMC again and we got there at 2pm. At 4pm we were told he was admitted, at 6pm we were told the bed was ready we just had to wait for a Pediatric doctor to come look at him, 8:30pm we were still in the ER and I told them that Noah gets siezure meds at 9pm and I didnt want the late can you order them. 10:15pm he still had not got meds and we were still in the ER. I went out to the nurse and said "where's his meds they are now an hr and 15 min late?) and she turned around with an attitude and said"Im doing my best to accomidate your needs..... I told her she wasnt and told her if his meds were not given to him by 10:45 we were leaving because he could get better care at home or a differnt hospital. Nobody came....we left./// we hadnt seen a dr. since 3:30pm.

He has been doing better. WE had a 24 hr EEG done last thursday thru Friday. The results showed abnormal epileptic waves on both the left and right sides of his brain but no real siezures. The neurological dr. says that the hospital is revising some equipment and it should be done by next month. Then he wants Noah to go into the hospital for three days to have an EEG done for that long to see if we can catch some real siezures,etc. Here is a picture of him all wrapped up for the test.




His other genetic testing came back normal. So we dont have to worry about that. Phew! But now there isnt anything more to test for. So we still dont know why he has these issues. So its comforting but frustrating at the same time.

I ended last term in school with a B+ average. Hip Hip Hooray! Now we will see how challenging two online classes are.

In the job category life isnt so good. I found out last week that as of Oct 4th I with 57 other employees are laid off. CLYNK is eliminating our positions and is going to be self service.... so now no pay check for me. I think Im going to try to watch a couple children in the home but I really dont know. MY schedule is pretty full with Noah and all his appts. I really dont know what to do.

But life is good. And Im really going to try to keep updating this better than I have been. I know a lot of you check it to see how our life is going. We love you and keep praying...the prayers are helping....

Last weigh in Noah weighed in at 23 lbs 4 oz!!!

Looking Up!!

So life for Noah and I is still looking up. This morning we actually got the "Special Tomato" chair that we have been waiting for. It was donated to us by a non profit organization that helps children with equipment. Noah sits so good in the chair.... I can finally get rid of his infant chairs. This gives him more room to gain head control because it sits more upright. It even can come off its base and be hooked to a chair like his very own booster seat! Woohoo... now he can sit at the table with us at dinner! YAY!!! Did I mention he looks terrific in it. Lets's show you, shall we!

Noah is doing so well. He got to see his old Physical Therapist today for the first time since she has been back from Maternity Leave and she couldnt get over how much he had improved. And it felt so nice to feel myself be so proud of him that my eyes were glazing over with tears. I've waited for this for so long. The improvements in just the last two months have been incredible. And the help Im getting now is great. We got the Special Tomato (havent yet figured out the name since I've never seen a brown tomato before LOL) we have a stander ordered and they are working on looking at strollers for him to try him in. Im so glad things are looking up.
We still havent heard any results of the other genetic testing that was done a couple of weeks ago. I'll give them one more week and then call.
My class is about over and I think I did pretty well actually. I'm going to say probally ending with a B average. We will see by tuesday so I will let everyone know. Im taking two classes next term but Im going to continue with the online thing...it is easier and gives me more time with the family.
The girls started school tuesday and Im enjoying taking them to the school bus in the morning and picking them up. Their excitement brings me back to when it was me getting on that bus (LOL) but Megan is excited to have me here to do her hair in the mornings....which I'm having so much fun with....MAarrisa isnt into much girly things but I did get a headband in her hair this morning...we will see if its there tonight.
Work is work.... still just one day a week. I got two days this week. And although the money sucks I kinda enjoy it because it gives me more time with Noah. Erik's sister and law just had a baby and we went and say her yesterday. The baby wieghs 6 lbs 9 oz and is so cute...but the whole time I looked at her all I could think was "Noah was 6lbs 11oz) I dont remember his being THAT little...where'd the time go? I blinked!!!!

Well thats it for now. Wanted to share with you the new and exciting "Tomato Seat" and give you an update. Im going to try to get back to blogging often.

Did I mention Noah is weighing in at 22lbs 14 oz!!! Woohoo!